Biggest ever National Indoor Games - Leicester 2016

Transcription

May/June 2016
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Biggest ever National Indoor
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Games - Leicester 2016 GE PROJ SEE IN
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supported by
Would you like
to advertise in
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July/August 2014
For more information please
contact Shirley Russell on
01953 451 620
shirley@britishpolio.org.uk
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LIVETAILS…
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The British Polio Fellowship
The British Polio Fellowship, The Xchange, Wilmington Close
Watford. WD18 0FQ
Freephone 0800 043 1935
Email: info@britishpolio.org.uk
Website: www.britishpolio.org.uk
National Officers
Chairman: Bryan Rowley
Vice Chairman: David Mitchell
Treasurer: Linda Evers
Trustees
Bosik Gharapetian,
Archie Leyden, Mark Fisher
Christine Lumb, Dorothy Crook
Patrons
Dr Moira Anderson OBE
Lionel Blair
Michael Cassidy CBE
Dr Robin Luff, MBBS, FRCP, FRCS, BSc
Hannah Gordon
Joe Fisher MBE
Baroness Fookes of Plymouth,Dr Steve Sturman, Mbch, FRCP, UBH
DBE, DL
Ambassadors
James Crisp, Julia Roberts, Anne Wafula-Strike MBE
and Professor Gareth Williams
Publisher: The British Polio Fellowship
Editor: Jon Gardner, BeyondPR: Email thebulletin@beyondpr.co.uk
Head of Content: Spencer Bailey, BeyondPR:
Email thebulletin@beyondpr.co.uk
Editorial Assistant: Matt Hobbs, BeyondPR:
Email thebulletin@beyondpr.co.uk
Design and production: BeyondPR.co.uk
Printing and distribution: Russell Press, Nottingham
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).
Editorial Policy. Apologies if your article has not
appeared in this edition, has been edited or shortened.
Pressure of space and competing priorities means we cannot
always publish everything that is supplied; however we
do endeavour to let people know if their submission is not
published for any reason. (See below for full editorial policy.)
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.
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
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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.
Contacts:
Chief Executive
Ted Hill, MBE. Tel: 01923 281 099
tedhill@britishpolio.org.uk
Office Coordinator
General Administration Support (Panels)
Hetty Kelly. Tel: 01923 281 090
hetty@britishpolio.org.uk
Head of Support Services
Ahmad Butt. Tel: 01923 281 093
ahmad@britishpolio.org.uk
Support Services Team
Disability Benefits, Information and Advice,
all membership issues and enquiries
Yvonne Wright, Carol Hughes, Sarah McHugh
Tel: 0800 043 1935
info@britishpolio.org.uk
Holiday Programme Co-ordinator/
Legacies/Gift Aid
Rosalind Evans. Tel: 01923 281 097
rosalindevans@britishpolio.org.uk
Marketing and Campaigns/Website
Kripen Dhrona. Tel: 01923 281 098
kripen@britishpolio.org.uk
Advertising
Shirley Russell. Tel: 01953 451 620
shirley@britishpolio.org.uk
Trusts/Fundraising
Diane Ware. Tel: 01923 281 091
diane@britishpolio.org.uk
Fundraising, Administration, In Memoriam,
Donations and Merchandise
Linda Davis. Tel: 01923 281 091
linda@britishpolio.org.uk
Finance
Dawn Grafetsberger. Tel: 01923 281 092
dawn@britishpolio.org.uk
Development Officer - Scotland
Tara Anderson. Mobile: 07903 701 251
tara@britishpolio.org.uk
Development Officer - South West England
Rebecca Colpus. Mobile: 07908 481 479
rebecca@britishpolio.org.uk
Rotary Liaison Ambassador
Colin Powell. Tel: 0800 043 1935
colin@britishpolio.org.uk
Online Forum Members & Guests
www.britishpolio.org.uk
the bulletin
Design and editorial team (BeyondPR)
Tel: 0114 275 6996
thebulletin@beyondpr.co.uk
The British Polio Fellowship would like to offer special thanks to The Premier League,
whose Charitable Fund kindly supports the significant ongoing production costs of the bulletin.
3
news from central office
Contents
News from
Central Office
Members’ PPS
Survey
Outreach
update
International
news
Mobility
matters
Fellowship
merchandise
Fundraising
news
Support
services
Members’ letters
and views
Branch and
regional news
History
corner
My
way
On the cover...
P4
P19
P22
P24
P28
P29
P31
P34
P37
P46
P62
P64
Christine Lumb together with her
grandsons presented the Gordon
Lumb Trophy at the Indoor Games.
See the full story on page 11.
4
Message from the
Chief Executive
Welcome to the May/June edition of the bulletin. We
always look forward to this edition every year as it
contains all of the news and great pictures from the
National Indoor Games. This year’s event was the best
yet, with a record number of attendees and participants,
with a great time had by all, the stories of which are
covered throughout this issue of the bulletin.
2016 has been a busy year already, with the rest of the year
showing no signs of slowing down. Everyone here at Central
Office is excited with the challenges ahead, and we hope with
the many events we have lined up for the rest of the year that we
can further draw attention to the great work we all do.
With Her Royal Highness, The Duchess of Gloucester opening
our new offices in January, and the National Indoor Games in
March, we’ve already had some great events which show how
far we’ve come as a charity in such a short space of time.
Bryan Rowley
To start off this issue of the bulletin we have on page six what
I am sure everyone will agree is an exceptional and very brave
letter from our National Chairman Bryan Rowley, who in all
things looks to the best interests of the membership above his
own. Bryan has requested his letter be published in the hope it
will explain his reason for standing down. I will say no more at
this point and let Bryan speak for himself on page six.
Indoor Games
19 March saw Branches from across the country get together
at the Marriott Hotel in Leicester again for another day of bowls,
kurling and other great sports. Everyone involved in organising
this year’s event was determined to make it the best National
Indoor Games yet in memory of Gordon Lumb, whose hardwork and commitment in organising previous games made the
event so enjoyable to look forward to every year.
A record number of attendees were present at this year’s
event - 229 - along with a record number of participants - 132,
a testament to all involved in organising the Indoor Games this
year, including Gordon’s wife Christine.
more, the level of feedback will be
seen by the media as representative
research and can help take our
campaign for greater awareness
of PPS to the next level. If you are
struggling with the form, but would
like to take part, contact the Support
Services team at Central Office who
will be happy to help.
vulnerable people.
Your voice heard
Let me say The British Polio
Fellowship does not use any of the
above fundraising methods and we
comply with all the requirements of
the Fundraising Standards Board.
A new initiative, carried out by the
European Organisation for Rare
Diseases (EURORDIS), will see the
creation of a Europe-wide panel of
members who are living with rare
diseases.
Doorstep crimes
Doorstep crimes are an issue we’ve
discussed recently and something
we’ve been very keen to include in
the bulletin, warning our readers
and members alike of the specific
tactics used to lure people into
inviting criminals into their home.
Unfortunately, we’re all at risk of
these scams, so our article will
help to identify such criminals
and prevent such opportunists
from taking advantage. For all the
information, turn to page eight.
Clinical management
of PPS form
Attendees at this year’s Indoor
Games were given a copy of the
Members’ PPS Survey to fill in that
was printed in the last issue of the
bulletin. We re-print again in this
issue on page 20 in the hope that
anyone who has not already done
so will take the time to fill it in. Over
60 readers have already replied
and I want to take this opportunity
to thank every one of you. The
more people who reply, the better
information we have on member
needs but there is more to our
request than that.
If we can secure 100 responses or
This is a great opportunity to help
improve the lives of people living
with PPS, so I urge you to take part
and make a difference. For more
information, turn to page 17.
History Corner
This month’s History Corner is
brought to us by Georgina Hay, who
takes over from the work done so
incredibly well by Barry North and
Bryan Rowley. Having enjoyed her
Travels with my Wheelchair articles,
I’m looking forward to reading her
History Corner columns in coming
issues.
Friendly fundraising
As a rule, British charities benefit
from a high level of trust from the
public. When things do go wrong,
which inevitably will do with 180,000
players in the sector, it hits the big
time and the media go into their
feeding frenzy.
It was a difficult summer for a
number of the bigger charities with
negative media stories on charity
fundraising tactics. It is argued
that some of the bigger boys have
become too aggressive and too
greedy in their fundraising and in
particular targeting and exploiting
The reports in the Daily Mail last
year surrounding some of the
biggest charities’ alleged fundraising
methods are disappointing to say
the least and reflect badly on the
sector. Action is due to be taken to
curb these methods and for many of
us, it will not be a day too soon.
Last call for would be
Trustees
If anyone is wanting to stand for
election as a Trustee in September
this is your last chance to let me
know. Please contact me as soon as
possible and be prepared to attend
a training session in Watford on
Wednesday 11 May. REMEMBER,
you must be a member of the
company as well as a member of
the charity to take part in the voting.
You can check if you registered by
calling us at Central Office.
Contacting Trustees
If you have a question you need
answering on how The British
Polio Fellowship is run please do
not hesitate to contact me here at
Central Office and I will do my best
to answer your query. If you have a
question specifically for a Trustee
please forward it to me at Central
Office via our Freepost address.
I’d like to thank each and every one
of you for your continued support
of The British Polio Fellowship, and
hope you enjoy this issue of the
bulletin. The copy deadline for the
July/August edition will be Friday
27 May. As usual, please send your
news, letters and photographs to
5
A statement from
the Chairman
Below we print in full a statement from Chair of Trustees,
Bryan Rowley. Bryan has requested this letter be published in
the bulletin in the hope that it will be of use to other members.
Dear Ted and friends,
This is a very personal letter, and
difficult to write.
Having been active with the
Fellowship for seventy years, I was
more than disappointed to miss the
opening of our new office and the
National Games.
For this I sincerely apologise to
you all. I assure you that I did not
do so lightly as I consider that
any role I have accepted must
be done to the best of my ability.
This ethos is one I have strived to
demonstrate during my position as
Chair of Trustees of our unique and
wonderful Fellowship.
Due to the fact that I do not feel
that I can carry out my duties to
my own standards, I have told Ted
that I wish to resign the Chair and
hand over in the interim to David
Mitchell. As Vice Chairman, David
has deputised excellently on the
occasions when I could not attend
in person.
We have realised that some
members were assuming that my
health problem was a prolonged
‘dip’ of Post Polio Syndrome (PPS).
So I have decided that in case they
were wondering “Is this something
for me to expect?” I must be
honest with you all. I assure you
that it has nothing to do with PPS.
6
Put bluntly, I have got untreatable
pancreatic cancer.
One fact that I feel should be
shared is this - because I was
taking strong painkillers for PPS,
the early signs of cancer may have
been hidden. Therefore we should
all be aware that if we are on
medication, some symptoms can
be masked or lost if we have an
additional problem to our PPS.
Please do not be upset or
sad for me, because I am not.
It is a fact of life to be faced
and dealt with, just like PPS
or any other problem.
Please do not be upset or sad for
me, because I am not. It is a fact of
life to be faced and dealt with, just
like PPS or any other problem of
life. My view as many know, is that
if life presents a problem we have
the choice of sitting in a corner and
blaming everyone else or getting
on with life.
that as an infant, I accepted that
whatever happened was simply
part of growing, so was perfectly
‘normal’ and the other was having
remarkable, loving parents who
gave me immeasurable support
often at great personal sacrifice.
At the age of eleven I became
involved with the Infantile Paralysis
Fellowship (now The British Polio
Fellowship) and a whole new
chapter in my life opened which
has continued until now, allowing
me the privilege of serving at
Branch, Regional and national
level. None of this could have been
possible without the unstinting
support of my wonderful wife,
Anne, who has shared my life for
30 plus years.
In closing, I would like to thank
members, Trustees and staff for
their support over the years, and to
wish you all every success in the
future.
Yours sincerely
Bryan Rowley
I have had a wonderful life. How
can I say that in view of the fact
that I contracted Polio at fifteen
months? For two reasons: one was
A message from
the acting National
Chairman
Dear members,
I know that the brave and poignant
letter from Bryan published
opposite will have come as a shock
and great sadness to you all, his
fellow members.
As Bryan’s proud and loyal Vice
Chairman the protocol is that I
now take over his role as National
Chairman. I accept the responsibility
of this task and promise to work
ceaselessly along with our fellow
Trustees to adhere to the rules
covering a charity and as directors
to abide by company law.
We are now well settled into our new
Central Office with proper working
conditions for our staff colleagues
and there are some most interesting
PPS initiatives ahead of us. (Watch
the bulletin!)
Finances (as with every charity)
are our main worry and National
Treasurer Linda Evers brings true
Yorkshire thrift to her role. We rely
on legacies and grants for the bulk
of our income, but our spirits are
kept high by the amazing and heart
warming fund raising carried out by
members. Bless you all.
As we all get older our medical
problems increase. Please, please
ring Support Services/use the
Freephone number/ if you need any
information or advice – this is what
The British Polio Fellowship is for.
Also keep sending in your stories,
Branch and Regional News and
photos to the bulletin. Your
contributions are vital and it shows
our advertisers, supporters and
influential people at national level
that we are worthy of recognition.
Remember our unofficial motto,
‘Polio may be dead now, but we are
not!’
Yours in Fellowship,
David Mitchell
Acting National Chairman
Primary Care Show 18-19 May, Birmingham
At time of going to press, the Central Office team were getting ready for The British
Polio Fellowship’s first attendance at the Primary Care Show, taking place from 18-19
May at the NEC in Birmingham.
The Primary Care and Public Health
event has been providing learning
and networking opportunities for
healthcare professionals for 26
years. With a focus on primary
and community care, it is a perfect
platform for The British Polio
Fellowship to set its stall out on
securing greater recognition for
members and calling for greater
awareness of Post Polio Syndrome
amongst the medical community.
“The Central Office team and I
attend these sorts of events as part
of our wider strategy to make the
medical profession more aware of
PPS and the needs of our members
more generally,” said Head of
Support Services Ahmad Butt.
“I have been delivering talks on
Personal Independence Payments
(PIP) to a number of Branches and
Groups and events like this present
opportunities to source more
examples of best practice that we
can share with members.”
The event includes speakers,
hands-on workshops and of course
the exhibition itself, which will
see The British Polio Fellowship
promoting the new Post Polio
Syndrome, A guide to management
for health care professionals.
A full round-up of the event will be in
the next issue.
7
Doorstep crimes
and scams
The British Polio Fellowship wants to warn its members of the
potential dangers of doorstep crimes and scams
Typical doorstep scams include the
offer of unnecessary maintenance
work by crooks posing as
gardeners, plumbers repair-men,
electricians, or even council
workers. Other conmen pose as
salesmen, offering anything from
mobility scooters to security or
smoke alarms. Other scammers
will call claiming the home owner
has won a lottery or offering a
range of other free other gifts.
These are just a few examples
but there are others and we all
need to be on our guard. These
conmen and criminals have been
known to target the over 60s as
they are usually at home during
the day, are more likely to be
alone and therefore can be more
isolated. Some in this age bracket
can also be more trusting when
accepting people into their homes
and women over 80 are the most
common victims of this kind of
crime and it is clear these criminals
have no shame in targeting those
people living with disabilities either.
Doorstep crimes and scams target vulnerable people,
using specific tactics to lure people into inviting these
criminals into their homes and taking advantage of them
from this position; stealing items or trapping people into
paying unfair rates for small jobs. These criminals can be
cunning and deceptive, so it is important to know how to
recognise such opportunists.
8
Most commonly these criminals
are the aforementioned gardeners,
repairmen etc., or as they are more
popularly known, ‘rogue traders’ –
someone who deals in speculative
trading outside of authorised
trading standards. These people
will often charge exorbitant and
rising fees for very minimal work or
work that doesn’t even need doing.
This problem is avoided by quite
simply getting a quote for the
work you need to have done and
then booking workers through a
business, number or address, as
often illegitimate workers will not
belong to or have any of these.
They will also likely cold-call to both
check you are in and sell you a
service that you didn’t even know
you needed or wanted. The advice
here would be to ignore these
calls and once more, to book your
own work online or from the Yellow
Pages.
Classic cases of ‘rogue traders’
include criminals who say, for
example, that “We are looking at all
of the boilers in the neighbourhood
to check for dangerous levels
of water damage” or “We were
looking at your roof and noticed
a few tiles that could be missing”.
In these cases, the damage
or faults stated are always
disproportionately worse than they
were anticipating and further works
are in desperate need of doing for
a minimal fee which will usually rise
ten-fold.
Other criminals of this nature will
try and gain access to the house
so they can steal items within.
These criminals can pose as meter
readers, charity collectors or even
as police officers. In other words,
people whose position of authority
you might deem sufficient to allow
entry into your home. The first thing
that one should consider here is
whether the person has official
paperwork to support their claims.
The second, and most important,
is that you should never invite
people you haven’t met before
into your home. People who invite
themselves into your house are
often disguised under the pretence
of working for the police or
upholding your safety, they might
claim they are checking smoke
or security alarms, or are doing
free-safety checks. These scams
work and entry is granted because
trusting people are scared of the
supposed inevitability of danger
to themselves which the conmen
sell, when in reality these problems
rarely exist. In the case of criminals
trying to gain access into your
home, you should always have a
chain or bar so that they cannot
easily enter and so you may speak
with someone face to face first.
Around 40 per cent of people
who have been victims of
these crimes have said that
it had a significant effect
on their life, whilst a further
23.3 per cent of people
experienced depression in the
months following.
These scams and doorstep crimes
are constantly changing and
tricking vulnerable people. What
is important is to always demand
authorised paperwork, never let
strangers in, have emergency
contacts available and always use
official workmen when it comes
to your garden, roof, boiler or
electricals.
make it difficult to find them, or
systems of debt and intimidation
can occur when particularly unfair
rates are charged for these menial
works. Around 40 per cent of
people who have been victims of
these crimes have said that it had
a significant effect on their life,
whilst a further 23.3 per cent of
people experienced depression in
the months following. The taking
advantage of the vulnerable is
very upsetting, yet still rare, but
the important thing is to remember
to heed caution when it comes
to strangers at your door. Telling
someone what has happened is
vital, as 63 per cent of victims are
targeted again and although it can
have a negative effect on the health
of the elderly and disabled, only 47
per cent of victims would tell their
doctor.
We all probably know someone
who has been at least targeted by
some of these criminals and our
advice is simple – don’t let it be
you. Always ask for identification
and don’t be afraid to ask
questions. If in any doubt, you can
always speak to Support Services
who are always happy to provide
members and non-members alike
with advice.
One of the biggest problems
with these instances however, is
that very few people actually let
someone know when they have
been victims of this kind of scam.
Feelings of shame or vulnerability
can deter victims of these crimes
from contacting the police and
following up the criminal activity,
with only an estimated five per cent
of instances reported. The lack of
traceability from the criminal can
9
The future is here!
Having contracted Polio at 14, John Simpson was unable to walk
without the aid of a locked-leg brace. However, at the age of 63
that has all changed for John, who is the UK’s first recipient of a
C-Brace exoskeleton.
The revolutionary C-Brace
technology allows people living
with spinal injury, partial paralysis,
post-stroke and Post Polio
Syndrome to walk naturally again.
The carbon fibre brace exoskeleton
contains computers and sensors
on the upper leg, which sense the
movement of the muscles and
transfers them to the robotic knee
support. The brace thus reduces
strain in the joint and generates the
power needed for movement.
John is delighted with the new
exoskeleton, which he has now
been wearing for a year, describing
it as amazing. This technology
has now been made available for
general sale, albeit at an expensive
price. The future looks bright
however, and we are hopeful that it
will soon become commonplace in
dealing with the effects of PPS.
For John, meanwhile, the
technology has proven life
changing. An avid golfer, John’s
first move was to head down to
his local club, where he found
the exoskeleton had dramatically
improved his game.
John continues to run the charity
he helped to found, The On Course
Foundation, which teaches injured
servicemen and women how to
play golf. A year down the line,
he is no less enamoured with his
exoskeleton. Hopefully the same will
soon be said of many other people
living with PPS.
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10
Win up north!
North West Region first to
receive Gordon Lumb trophy
North West victory at biggest ever National Indoor Games in Leicester 2016
A jubilant North West Region gather to celebrate their victory and securing
the Gordon Lumb award at the National Indoor Games
The North West Region of The British Polio Fellowship is celebrating its victory at the National Indoor
Games.
Led by Branch Chairman Mike
Griffiths, a jubilant North West team
pulled off a superb set of individual
performances and accumulated
enough points to walk away with
the brand new Gordon Lumb
Trophy for Top Region, presented
by the Chair of the Championship
Committee, Christine Lumb,
following the Gala Dinner on
Saturday evening.
The East Midlands Region was
edged into second place this year,
with Scotland and Home Counties
North third and fourth respectively
in what was one of the most
thrilling and hotly contested games
for many years. With surprises
and upsets along the way making
2016 a great Indoor Games for
the neutrals in the audience and a
somewhat tense affair for everyone
else!
The Yorkshire Region was a clear
favourite, but a lot of smart money
was on the North West and others
were watching the team from
Northern Ireland closely, given NI’s
impressive debut at the games in
2015.
A record 229 attendees and 132
competitors arrived at the Leicester
Marriott Hotel for the Indoor
Games having qualified from the
ten regional heats to compete
across nine games: Kurling;
Bowls; Darts; Boccia; Draughts;
Cribbage; Dominoes; 5s and 3s;
and Scrabble. As usual, medals
were awarded to the winners of
each sport with the Top Trophy
renamed in memory of late Games
Co-ordinator Gordon Lumb.
11
ABOVE LEFT. Top Region: (Top
row, left to right) Steve McCarthy,
Christopher Hill, Phillip Hill, George
Davis with Christine Lumb (centre)
with the Gordon Lumb Trophy for
Top Region at The British Polio
Fellowship National Indoor Games
in Leicester
The North West stormed to victory
with Andrew Gilliland securing gold
in draughts and Tom Maddock
and Dinesh Gorasia gaining silver
and bronze respectively in the
darts sitting; a feat repeated by
Howard Parker and Harry Jackson
coming second and third in darts
(standing). Chairman Mike Griffiths
himself came fourth in Cribbage,
while Lyn Morton came third in a
tense Boccia (class 1) event.
The gala dinner on Saturday night
was an evening of mixed emotions
– joy for the North West and the
individual winners but tinged with
sadness in remembering absent
friends. As the first games without
Gordon Lumb, he was in the
thoughts of many and especially
so following some words from
Christine before she was joined
by her grandsons, to present the
Gordon Lumb trophy to the winning
region.
12
Vice Chairman David Mitchell
spoke for everyone in remembering
Chairman, Bryan Rowley, who was
forced to miss the games due to
illness. David also requested that
as many people as possible fill in
the PPS survey from the last issue
as the more responses received,
the better the charity can plan how
best to help members where they
need it most.
It was a hard fought defence
of the Yorkshire Region’s title,
but it was not to be in 2016.
The big surprise this year was the
absence of the Yorkshire Region
from the top three after years of
dominance, despite David Howells
continuing his amazing winning
streak in the darts (standing). The
Yorkshire Region triumphed in
ABOVE. Bradford’s David
Howells receives his
medal for first place in
darts (standing) at the
British Polio National
Indoor Games in
Leicester from Phoebe
Plomer and Kerry Curtis
2015, 2013 and came third in 2014,
so slipping out of the top rankings
for the first time was the shock of
the tournament, with Bradford’s
David Howells making it four golds
in the last four years not enough to
keep Yorkshire on top.
In addition to David’s gold,
Christine Lumb came third in
Scrabble, Pauline Henfrey came
fourth in Cribbage and Ann
Bermingham and Pat Smith
scooped bronze in the dominoes,
with Brenda Stewart securing
fourth in the Kurling. It was a hard
fought defence of the Yorkshire
Region’s title, but it was not to be in
2016.
In terms of individual
performances, it was a mixed year,
with some of the usual faces still
delivering amazing performances,
but with new names being added
to some of the winning medals and
trophies.
Left. (back row, left to right) Archie
Leyden, and David Mitchell. (front row,
left to right) Christine Lumb and
Dorothy Crook
ABOVE. (left to right) Dawn Egan,
Sandra Clegg and Rita Jagger
Jim from Bradford continued his
unbelievable run of victories in the
darts, securing gold once more;
but these sorts of results were
tempered by upsets in other areas.
Aiden Linton Smith had to settle
for second place in the Boccia
this time around, as Sharda Karia
stepped in to secure gold in what
was another strongly contested set
of games.
As the Boccia events moved into
their final tense stages, people
finishing in other events came
along to watch. You could hear
a pin drop as victories for Home
Counties North and East Midlands
in Boccia class 1 and 2 could have
changed the result. Lyn Morton’s
hard fought third place for the North
West was enough to edge the
East Midlands Region into second
place overall, despite the amazing
individual performance from the
East Midlands’ Sharda Karia to take
gold in Boccia class 2.
Dominoes and draughts were no
less tense. The draughts players
were locked in a combat of quiet
concentration in the upper rooms
of the Leicester Marriott and while
the contestants in the dominoes
were more animated, there was no
denying that all were playing to win
and that each game represented
not just a chance for personal glory,
but that every point secured would
lead their region one step closer to
triumph.
“I would like to congratulate the
North West on their victory at the
Indoor Games,” said Ted Hill. “It
was once again another hard
fought contest but is also the
one event in our calendar when
members from across the country
get to meet and socialise. It is
about relationships and fellowship
and as such it was a pleasure to
welcome a team from Northern
Ireland once more.”
The Northern Ireland team again
delivered a number of superb
individual performances, with Eddie
McCory coming a very respectable
third in the Bowls, William Auld
coming fourth in Boccia class 2 –
no mean feat in what was a very
competitive event. Joe McVeigh
also came fourth for Northern
Ireland in Darts (sitting).
The Indoor Games has something
new each year and 2016 has
proved no exception.
It was an emotional event as the
first without Gordon Lumb, but
John Haddock and Pat Parker,
together with Shirley Russell and
the team of officials and staff from
Central Office did Gordon proud.
Record numbers of attendees,
record competitors, a team from
Northern Ireland and the tensest
games in many years will be long
remembered.
Record numbers of attendees,
record competitors, a team
from Northern Ireland and the
tensest games in many years
will be long remembered.
Being in Leicester as the city’s
football club edged closer to
a fairytale Premier League title
added an additional buzz. The East
Midlands Region was keen to make
it a Leicester sporting double and
they will be hoping being edged
into second is not an omen for
Leicester City’s prospects!
The Indoor Games would not be
possible without the hard work of
all the officials who put so much
work into making the games
a success. Our thanks go to
everyone involved in making it such
a special event.
Special thanks to: Margaret
Roberts; David Mitchell; Jim
McDonald; Jan Taylor; Angie Tear;
Richard Tear; Dave Gills; Yvonne
Wright; Joan Robertson; George
Davies; Steve McCarthy; Chris Hill;
Phill Hill and Les Attwood, and
of course the ladies who run the
tombola each year.
You will find all the results on the
page overleaf.
13
National Indoor Games Results 2016
SCRABBLE
CRIBBAGE
4th 3rd
2nd 1st 4th
3rd
2nd
1st
Amanda Leeks
Chris Lumb
Muriel Bradshaw
Mary Guild
Southern
Yorkshire
North West
Scotland
DARTS STANDING
BOWLS
4th
3rd
2nd
1st 4th
3rd
2nd
1st
Dennis Tilley
Harry Jackson
Howard Parker
David Howells
Western
North West
North West
Yorkshire
Pauline Henfrey
Gaye Lockyer
Steve Melia
Tim Pratt
Yorkshire
H.C.N.
Western
East Midlands
Mike Griffiths
Eddie McCrory
Charles Raymond
Norma Tilley
North West
Northern Ireland
H.C.N.
Western
DARTS SITTING
BOCCIA CLASS 1
4th
3rd
2nd
1st 4th
3rd 2nd
1st
Joe McVeigh
Dinesh Gorasia
Tom Maddock
Stewart Thompson
Northern Ireland
North West
North West
Scotland
Linda Brodia
Lyn Morton
Harry Parkin
Teresa Raymond
Scotland
North West
East Midlands
H.C.N.
DOMINOES
BOCCIA CLASS 2
4th
3rd
2nd 1st
4th
William Auld
Northern Ireland
3rd
Paul Stanton
Western
2nd
Aidan Linton Smith H.C.N.
1st
Sharda Karia
Anne Hogarth/
North West
Beryl Brereton
Ann Bermingham/
Yorkshire
Pat Smith
Jean Grarness/
Wales
David Heatheral
Bob Howell/
North of England
Isobel McAnney
KURLING
5s & 3s
4th
Brenda Stewart
Yorkshire
4th
3rd
Dave Clark
North West
3rd
2nd
Mike Jackson
East Midlands
2nd
1st
Pat Leyden
Scotland
1st
Mary Barker/
Western
Bill Burton
Coral Williams/
Wales
Leitisha Wills
Dee Cartwright/
North West
Karen Pyke
Joan/Dennis Poole East Midlands
DRAUGHTS
TOP REGIONS
4th
3rd
2nd
1st
4th 3rd
2nd
1st
14
Pam Jones
Abdul Jamil
Bill Fenwick
Andrew Gilliland
Western
H.C.N.
Scotland
North West
East Midlands
H.C.N.
Scotland
East Midlands
North West
Celebrity Polio profile:
Ian Dury
Ian Dury was an integral part of
the British rock’n’roll and new
wave scene, especially coming
to prominence in the late 70s.
advantage of the punk rock scene
and formed in 1970, but they were
largely unsuccessful. Here, however,
Dury honed his writing skills and
developed his stage presence.
It was only until he joined The
Blockheads that he became his
infamous, almost fearsome self.
Dury contracted Polio during the
1949 epidemic, and believes he
contracted Polio from a swimming
pool when on a school trip to
Southend-upon-Sea. Dury never
let Polio stop him and claimed
that, “I’m charismatic and I’m
not ashamed about my physical
appearance.” Dury’s first band,
Kilburn and the High Roads took
In 1977 Dury and The Blockheads
were at the height of their powers,
touring with other artists signed
to the Stiff label - such as Elvis
Costello - and the following year
Dury got a number one single with
Hit Me With Your Rhythm Stick,
which utilised Dury’s unique writing
and wit. Following this, in 1980,
they released Juke Box Dury, which
Dury never let Polio stop
him and claimed that, “I’m
charismatic and I’m not
ashamed about my physical
appearance.”
included all of their most popular
hits including Sex & Drugs & Rock
& Roll, a fan favourite.
In the later 1980s, however, Dury’s
music became somewhat less
relevant, so he moved on to acting.
He was involved in numerous
television dramas and films, such
as Roman Polanski’s 1986, Pirates,
and later alongside Sylvester
Stallone in Judge Dredd (1995).
Although his acting roles were
largely unremarkable they underpin
his vibrant and characterful
persona, arguably utilising his
stage presence for a different art
form. Dury was also a keen painter,
having gone to The Royal College
of Art, and was talented with a
brush in his hand. Adhering to his
intriguing looks, he once stated
he was an interesting subject; “I
painted myself as an art student
about 500 times.”
Cont
▼
▼
Ian Dury is most renowned for his
work with The Blockheads, with hits
such as Hit Me With Your Rhythm
Stick, Sex & Drugs & Rock & Roll
and Reasons To Be Cheerful.
Pianist Jools Holland once said of
Dury that he “should posthumously
be made our poet laureate”, such
was his mastery of lyric writing,
while Annie Nightingale, Radio 1
DJ, claimed he was, “the most
cheerful genius I have ever met.”
Dury was original, a pioneer and
extraordinarily charismatic, and
like many early Polio patients, had
a drive and determination which
negated his potential set-backs.
15
Cont
▼
▼
His style and performance inspired
lots of popular musicians to this
day. Damon Albarn for instance,
of Blur and Gorillaz fame, said that
Dury was “the man” and was “the
first person who really got me going
as far as lyrics were concerned.”
And Suggs, from British ska band
Madness, claimed, “Ian really was
the reason Madness started.” His
lyricism was inspirational, but part
of the reason for Dury’s recognition
was in his vigilance to maintain a
strong sense of self.
to achieve the eradication of Polio.
Unicef spokeswoman Jo Bexley
referred to Dury’s commitment to
the cause as ‘legendary’ when
speaking of how despite Dury’s
slow descent into poor health it
didn’t deter his support where
charity was concerned. Dury died
in 2000 from cancer of the colon,
which he had been diagnosed
with five years earlier. His work as
a goodwill ambassador for Unicef
revealed Dury’s drive to succeed,
with which he approached
everything.
While some have pointed to Dury’s
rather intense character, he was
Dury received the biopic treatment
also an exceptionally charitable
in 2010, ten years after his death,
135x180mm_HalfPage_SDAssistPlus_Ad_AW.pdf
1
18/03/2014
16:34
man, and fought alongside Unicef
a feature named after one of his
16
biggest hits: Sex & Drugs & Rock
& Roll. Played by Andy Serkis the
film was a character study and was
commercially successful, it revealed
an in depth character study of Dury
and importantly raised the profile,
and brought back into public
consciousness, the story of an
inspirational Polio survivor.
If you have a suggestion for
someone that the bulletin can
cover in future issues, do let us
know at the usual address.
Improving conditions for people
living with PPS
The bulletin would like to take this opportunity to invite all members to participate in an exciting new
initiative aimed at making the voice of rare disease patients stronger.
related to specific subjects that
concern them. They are free to
decide which surveys they wish to
participate in.
The new initiative, carried out by
the European Organisation for Rare
Diseases (EURORDIS), will see the
creation of a Europe-wide panel of
members who have rare diseases.
It’s a great opportunity to help
improve the lives of people
living with PPS, and rare
diseases more generally.
EURORDIS aim to work as closely
as possible with their members
throughout the project, gathering
the perspectives of people living
with a rare disease, their families
and patient representatives.
Ultimately, it is hoped that the
project will become an advocacy
tool for EURORDIS, helping them
to improve the understanding of
the needs of rare disease patients.
people living with rare diseases,
entitled the Rare Barometer
programme. This panel will
comprise of patients who are
willing to take part in surveys on
a regular basis, with results to be
available on a European-wide or
country by country basis.
In order to carry out surveys on
a regular basis, EURORDIS are
aiming to construct a panel of
After registration, participants will
be sent an email to request their
participation in each new survey
strongly encourages members to
participate in EURORDIS’ work.
All responses are anonymous; will
strictly adhere to European Data
Protection standards, ensuring
confidentiality; and will be owned
by EURORDIS and not be used for
commercial purposes. It’s a great
opportunity to help improve the
lives of people living with PPS, and
rare diseases more generally.
You can register to partake in
the EURORDIS surveys on their
website.
http://www.eurordis.org/voices
We will also share a link on the
British Polio Fellowship homepage.
17
Welcome to our new
Office
Co-ordinator
The bulletin is delighted to be able to introduce to readers Hetty Kelly,
who becomes the latest member of the Central Office team in Watford.
Hetty joins in the role of Office
Co-ordinator, as Sarah McHugh
moves over to join the Support
Services team. Sarah’s experience
will be invaluable as Support
Services find themselves
increasingly busy responding to
member enquiries and in particular
those concerned with the impact of
Personal Independence Payments
(PIP).
As a practiced Volunteer Manager,
Hetty has over ten years’ experience
in the voluntary sector, having
worked for organisations like MIND
and YMCA Wales.
Originally from Swansea, Hetty
recently graduated from Brunel
University with a degree in Social
Anthropology, which should stand
her in good stead in helping the
charity support members living with
Polio and Post Polio Syndrome.
“I have really enjoyed getting to
know the team and getting stuck
into my new role,” said Hetty. “I
look forward to continuing to assist
the team in providing a helpful and
friendly service to our members,
and creating positive change in the
lives of people affected by Polio
and PPS.”
“The office team are always
busy but with the raft of changes
coming through from government,
Support Services has never been
more active, so Hetty’s arrival
is welcome,” said Ted Hill. “It is
another busy year for us and
recruiting an experienced Office
Co-ordinator like Hetty gives
Sarah the opportunity to help
Support Services – as our priority
is supporting members, this is the
one area we focus on a lot. Hetty
has already hit the ground running
and I am sure members will give
her a warm Fellowship welcome
when they speak to her.”
• STOP PRESS • STOP PRESS • STOP PRESS • STOP PRESS • STOP PRESS • STOP PRESS •
At time of going to press, the results of the latest YouGov research commissioned by The British
Polio Fellowship were just coming in.
We asked a sample of the
British public living with a limiting
disability if they think the disabled
community is well-represented by
the UK’s major brands.
When people were asked to think
generally about how the disabled
community is represented by the
UK’s major brands (e.g. in the
media, advertising, the products/
services they offer etc.), 69
per cent (net) said they felt the
disabled community is very poorly
represented by the UK’s major
brands and that a lot needs to be
18
done to change this.
In comparison, only two per cent
said the disabled community was
very well represented and nothing
needs to be done.
“The findings are broadly what we
expected to see, but shows why
The British Polio Fellowship has
become the charity launch partner
for the Purple Hound brand,”
said Ted Hill when commenting
on the results. “There is room for
improvement but this is unlikely
to happen on its own and the
more we can do to encourage UK
brands to take the needs of those
living with disabilities such as Polio
and PPS seriously, the better we
can make life for everyone.”
Work on the Purple Hound
project is already well advanced.
The first stage of the website is
already live and the second wave
of development in response to
feedback from bulletin readers
will be launched later this year. The
hard copy directory will also form
a part of the Purple Hound brand
and is due in 2017.
Members’ PPS Survey
A reminder for help
Your views
matter
On pages 25 and 26 of the last issue of the bulletin, an article on the clinical management of Post
Polio Syndrome, was printed, together with an attached form for your feedback. The response to
this survey has been fantastic and in wishing to thank everyone who has replied, we would also
like to appeal for anyone who has not already done so to send back the form.
The British Polio Fellowship has
commissioned several YouGov
surveys to help get the message
across about the needs of our
members. The more responses
we have to this survey, the more
seriously it will be taken and the
more likely it is that we can push for
greater change on the back of it.
Every completed form will enable
Central Office to help offer the best
possible support to everyone living
with PPS. We appreciate each and
every form that comes in, so this
is a big thank you to all who have
taken the trouble to fill in the form
but also to say to those who may be
thinking about it that it really does
matter.
As mentioned in our previous article,
the forms contain questions which
can provide us with a wealth of
information and data to help us and
health professionals diagnose and
manage the symptoms of PPS. Due
to the wide range of symptoms PPS
presents, it can be hard for GPs and
other clinicians to recognise and
diagnose PPS, which is why it’s so
vital we receive as much feedback
as possible.
The management of PPS is
currently far from ideal, which is
why we need your help. There is
no greater resource for us or health
professionals than the experience
of you, our members. By filling out
our clinical management form, you
can provide valuable first hand data
of PPS treatment through the NHS,
which will help others as well as
all those who in the future will be
diagnosed with PPS.
In addition to gauging your
experiences when it comes to
PPS and the NHS, we can also
determine if there are any other
forms of intervention our members
use, as well as how many
members are then referred on to an
appropriate health professional for
further assessment and treatment.
Given the wide variety of symptoms
PPS displays, care, treatment and
support must be tailored for each
individual patient. With over 15
calls a day on PPS received by the
Support Services team in 2015, it’s
vital we do as much as possible to
enhance our own understanding
of PPS, as well as educating health
professionals such as GPs.
You can find a copy of the form
overleaf. If you are unable to fill it in
and would rather speak to someone
or complete it online, do not hesitate
to contact Central Office and we will
be happy to process your views in
whatever way suits you.
Thank you for your time and
support. Please return completed
forms to The British Polio
Fellowship. If you use the Freepost
address, it will not cost you
anything, but if you use a stamp, it
does save us the postage cost.
Cont
▼
▼
At time of going to press, over 60
readers had responded, which is
one of the biggest responses to a
bulletin survey we have ever seen.
While we are sure this reflects the
impact PPS has on the lives of so
many members, it is important we
get as much feedback as possible.
19

Cont
▼
▼
Members’ PPS Survey
Name..............................................................................(optional)
Have you been diagnosed with PPS? Y / N
Branch/Region..............................................................................
If so, what year were you first diagnosed?...........................
Are you a member of The British Polio Fellowship?
Y/N
If you have not been formerly diagnosed with PPS,
do you suspect you have the condition? Y / N
Tick any of the symptoms
you have or have had in
the past
Symptoms of PPS

Neuromuscular
fatigue
Neuromuscular
weakness
Please tick the treatment(s)
you have been offered, from
the list below
Treatments
Pacing
Energy
conservation
General fatigue
Aids and
appliances
Pain
Pain management
Respiratory
Orthotics
Psychological
Pharmacology
Sleep problems
Management of
respiratory condition
Dysphagia
(swallowing)
Cold intolerance
Bowel and urinary
problems
Other
Thank you for your time.
The completed form can
be returned Freepost
to The British Polio
Fellowship but if you
affix a stamp it will save
us the cost of postage.
Exercise/physical
activity

Tick the medical professionals you have been
treated by, with an explanation of what they
assisted you with
Health
professional
delivering
treatment
GP
Physiotherapist
Occupational
therapist
Orthotist
Respiratory/
sleep disorder
specialist
Psychological
interventions
Physiotherapist
specialist in
neurological
conditions
Speech/language
therapy
Clinical
psychologist
Self management
Weight management
Speech &
language
therapist
Nutrition
Dietician
Hydrotherapy
Continue on a separate
sheet if necessary
Relaxation
Allied Health
Professional
Falls prevention
training
Other (please
name)
A larger copy of the third table is available to download from the website should anyone wish to go into more detail.
Any information you feel would be useful but is not covered above, please tell us about it here.
20
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outreach update
Scotland
development update
Fife Groups
Since my last update the Fife
Groups met on 18 and 25
February. Robust discussions took
place at both meetings mostly
around healthcare services and GP
awareness. At both meetings we
discussed my forthcoming meeting
with the Scottish Health Council
(SHC) and I received numerous
examples on issues that members
wanted me to share with the SHC.
This included:
•GP appointment process
•DLA transfer to PIP
•Orthotics provision and
assessment
•GP awareness of LEOP and PPS
Scottish Health Council
On 26 February, Archie Leyden and
I met with a Project Officer from
the Scottish Health Council – this
was as a follow-up from providing
our evidence paper. We ably
described the negative outcomes
for members due to the lack of
awareness of LEOP and PPS
by Health Professionals and the
significant disparity in healthcare
provision not only between local
authorities but also between GPs
in the same local authority. The
Project Officer certainly viewed that
potentially we should be working
together and suggested health
related surveys, focus groups,
individual stories and one-to-one
interviews. From this discussion
we will be adapting our planned
22
Member Survey to focus more on
health service provision and have
provided the Project Officer with a
request for joint working. We are
currently waiting for a reply.
North Strathclyde
Group
We have now booked the venue
for the first North Strathclyde
meeting. This initial meeting is
planned for Wednesday 27 April
at the Dumbuck House Hotel in
West Dunbartonshire by the Clyde.
We hope this venue will appeal to
members north of the Clyde and
perhaps attract members from
Argyll and Bute and even the more
Western edges of Stirlingshire.
a Group, members in the area
speak fondly of the old Group
that they used to attend and we
hope that this fond memory will
encourage members to attend the
new Group.
Tara Anderson
Development Officer
Scotland
07903 701 251
tara@britishpolio.org.uk
The mailing invites are being sent
to the postcodes G, FK and PA and
we hope for a positive response.
It has been many years since
Glasgow or North Strathclyde had
outreach update
South West England
development update
Case studies – a way to get better understanding of the
challenges of living with Polio to the public at large and to
health professionals.
When I was first in post a request went out to members in the South West for their
life experience of living with Polio to be used for case studies. I was delighted with
the response and BeyondPR have been making contact with those people and
gathering a lot of good stories.
Why the need for case studies?
There are several answers to this
question. The My Way section in
each bulletin is a testament to the
value of individual members and
these stories often act as inspiration
for the thousands of bulletin
readers and thereby encouraging
others in similar situations who they
may never have met.
We know many thousands of people
with Polio right now are going to be
developing PPS in the future and
these stories are going to prove
invaluable now and in years to
come, when a new generation is
looking for advice on PPS and how
to manage the condition.
Secondly - nationally and regionally
we are striving to get our message
across about the needs of members
and indeed on behalf of everyone
living with Polio and PPS. In the
South West with information days,
and opportunities given to me to
engage with health professionals,
the message is beginning to go out.
The BBC Spotlight programme has
featured a couple of our members
in Cornwall with their issues
concerning orthotics and leading
from this I will shortly be meeting
representatives from the Cornwall
Clinical Commissioning group to
discuss the issues members have.
Having individual accounts of their
experiences are of immense value
with such contacts.
Thirdly - it is always useful to
have personal stories for local
newspapers, community radio
broadcasts and talks to community
groups. Talking about a particular
person’s situation, how they deal
with it and how they feel about
their situation, brings articles to
life and are more likely to be read
and remembered. Much popular
television revolves round individual
stories (although mostly fictitious).
Lastly and thinking about the future,
the individual stories of those who
have been helped by the new work
done in the South West by The
British Polio Fellowship over the
last two years, is of immense use in
helping potential future funders to
understand how vital the work being
done is. So I am requesting that you
will be willing to express your views
on the new initiatives that have taken
place in the South West, and how
they have benefited you. This will be
greatly appreciated.
We can always do with more case
studies. So, if you haven’t thought
of it before, don’t be shy. I know that
many of you have a story to tell and
there are people out there who want
to hear it - so if you are willing to take
part, please get in touch. You can
simply supply us with your name
and contact details which will allow
us to include you on our register
and arrange for someone from
BeyondPR to contact you to discuss
your story and produce a written
document for your approval. If you
would rather, you can send in a case
study in your own words. This is
very welcome and we appreciate
your stories no matter how they
reach us. Also, photos are a big help
- particularly ones from the past and
present.
Thanks for your support.
Rebecca Colpus
Development Officer
South West England
07908 481479
rebecca@britishpolio.org.uk
If you have already supplied a case
study and are unsure about its
progress, contact the team at
23
International news
India five years Polio free
How India rid themselves
of their Polio problem
Anticipated by some that it would be the last country to become Polio free, this year India marks its
five year anniversary since its last case of wild Polio - 13 February 2011 - and two years since it was
officially declared Polio free by the World Health Organisation (WHO) on the 24 March 2014.
Afghanistan and Pakistan are the
last remaining bastions of Polio,
but India has eradicated it through
an excellent immunisation strategy.
Considering India’s comparatively
huge, dense population and
large-scale poverty issues, The
British Polio Fellowship deems
the achievement of three years
free exceptionally praiseworthy
and believes the case-study can
become a blueprint for future
endemic elimination.
One particularly effective aspect
of India’s Polio plan was its
24
deployment of a 7,500 social
mobilisation network in areas
of high risk, which included
locales of intense poor sanitation
and economic disparity. The
system allowed the network to
reach the most densely packed
and vulnerable areas in India,
contributing to the immunisation of
170 million children.
Additionally, Unicef - the fore
leader of Polio eradication targeted mothers meetings to
spread goodwill in the form of a
maternal driven plea for the family
to immunise. Similarly it is women,
and more specifically mothers,
in Pakistan who are leading the
immunisation drive, especially
those that have experienced Polio
at a familial level. It shows how an
impetus to vaccinate stems from
the family home. As well as using
mothers meetings, the eradication
push in India incentivised
community leaders and religious
figures to spread their significant
local influence to further encourage
people to vaccinate their children.
International news
PPS Guide lands
Down
Under
Solidarity was not just evident
on a local level and it would
be unfair not to recognise how
the effort was not just Unicef
impelled on a national level. The
plight of Unicef was matched
by commitment from the Indian
Government and the rest of
the Global Polio Eradication
Initiative, ie, the WHO, Rotary
International and the US
Centre for Disease Control and
Prevention.
Importantly, in ridding India of
Polio, an infrastructure has been
developed which now provides
India with the blueprint through
which to confront other endemic
diseases as well. A further 27
million children are born in India
every year, so this structure is
vital in the continuing prevention
of Polio and other illnesses in the
planet’s fastest growing nation.
Comparatively, in present
Pakistan and Afghanistan there
exists the continuing threat of
the Taliban who believe Polio
immunisation is a western
biological weapon. Only in early
January did a Taliban bomb
kill 12 policemen guarding
an immunisation effort in
Balochistan in South West
Pakistan. However, despite
incidences of violence against
the Polio vaccination effort
and a fervent paranoia led by
extremist groups, the National
Geographic believes 2016 will
be the year where the final case
of wild Polio is recorded. A
strong drive from Larkana district
Deputy Commissioner Javed Ali
Jagirani, who has encouraged
teachers, health workers,
religious scholars and parents,
in a strategy similar to India’s
educational top-down system,
underpins how successful
systems of unity and information
lead the way in Polio eradication.
The India case study, more
than anything, emphasises
the need for cooperation when
confronting such an endemic.
Obviously, the problem of Post
Polio Syndrome (PPS) is one
that must be informed on a
global scale, so as to avoid
improper preparation for the
generations who have yet to
experience it. Indeed, one must
be optimistic considering the
togetherness and strength of the
Polio community in overcoming
Polio in India and globally.
Source:
http://www.theguardian.com/global-development-professionals-network/2014/jan/13/lessons-india-poliofree-landmark
http://www.thebetterindia.com/22182/success-story-of-eradication-of-polio-in-india/
http://phenomena.nationalgeographic.com/2016/01/04/2016-predict/
Following last month’s publication
of Post Polio Syndrome: a guide
to management for health care
professionals, we’re very pleased
to announce that the guide has
already made it all the way to the
other side of the world, having
been picked up by our Australian
friends at Polio Oz News.
When we initially launched the guide
it was for dual purposes. Firstly, to
improve knowledge of how to care for
PPS within the medical community,
and secondly to provide as much
information as possible to those living
with the condition.
Obviously the further the word is
disseminated, the more people with
PPS we will reach, and the more
medical professionals are likely to
see our document. We’re really glad
it’s already made it to Australia and
hope to see Post Polio Syndrome: a
guide to management for health care
professionals making appearances
in other countries around the world
shortly. If you know anyone overseas
living with PPS, or working in the
medical profession, please forward
them a copy of the guide, or direct
them to our website, where they can
download a free copy.
25
International news
EPU pushes forward with
PoPSyCLE initiative
Following widespread concern among the worldwide Polio community, the European Polio Union (EPU) has
announced an exciting new initiative, PoPSyCLE to help tackle the late effects of Polio.
Two parallel concurrences have
necessitated this initiative. Firstly, it
has become abundantly clear within
the Polio community that around
the world, there is a lack of training,
knowledge and understanding
amongst the medical profession, to
Polio survivors and those with Post
Polio Syndrome (PPS) in particular.
This is particularly problematic with
the increased age range of Polio
survivors in the Western world,
many of whom are now beginning
to encounter the consequences of
PPS.
Secondly, there are an increased
number of Polio survivors in subSaharan Africa and on the Indian
26
sub-continent. Just last year, an
EPU study showed that there are
over 15 million Polio survivors, of
which it is thought eight million are
on the Indian sub-continent (the true
total world-wide is probably more in
the region of 28 million).
With an ever expanding population
of Polio survivors, and a struggling
medical body, it is clear that
something needs to be done to
address PPS on an international
level. As the last European PPS
conference in Amsterdam (June
2014) closed there was a call
from both Polio survivors and
international medical leaders for the
formation of a World Polio Alliance.
This World Polio Alliance would be
tasked with:
• Retaining the existing PPS body
of knowledge that is in danger
of being lost in the "developed"
world
• Establishing an internationally
accredited training facility for
medical personnel in the care,
management and treatment of
PPS
• Creating and maintaining an
online support and exchange
facility for Polio survivor support
groups
International news
It was agreed in Amsterdam that
this initiative would be actioned
by the EPU, and they have been
diligently working away in the
background despite seemingly
going quiet on the issue.
We can now share some details of
exactly what they’ve been doing
with you.
1. Formal letters of understanding
on the formation of a World Polio
Alliance have been signed with
organisations in Canada, Australia
and New Zealand
2. An application for funding
has been submitted to the Bill
& Melinda Gates Foundation
(BMGF) for the establishment
of "PoPSyCLE" - Post-Polio
Syndrome Centre for Life-long
Excellence. This application has
been made following extensive
talks and discussions with clinical
personnel in St. Thomas' Hospital,
London and the Queen Elizabeth
Foundation for Neurological
Rehabilitation. It is intended that
the UK would be the initial location
and pivot for the project and as it
develops it will go on to include
other established European centres
such as PTU Copenhagen, AIDM
Onlus Malceisne, AMC Amsterdam.
(The initial location was decided
on the basis of available physical
facilities, NHS agreement, and after
consultation with EPU medical
advisors)
3. Negotiations have been initiated
with other major international
commercial concerns who have
a track record of donating to
world leading initiatives such as
PoPSyCLE. These are ongoing and
still have to bear fruit but to date all
indicators are on the positive side
4. Through the EPU President's
membership, negotiations are
at an advanced stage with
the Worshipful Company of
Information Technologists (WCIT),
a city institution made up from the
senior and board level personnel
of leading IT firms. The WCIT
supports charitable bodies
through its various committees,
donating hardware, software,
software engineering and project
management skills through
personnel secondment
5. The Brexit debate has caused
a significant stumbling block in
negotiations. Potential access to
EU funds is stalled until after June
2016 at the earliest. Representation
and argument against this attitude
have been made both to the
Commission, and EU Parliamentary
authorities through our membership
of the EDF but presently to no avail
6. Certain key medical personnel
to head up the initiative have been
identified and are committed to it
dependent upon funding. Physical
facilities have also been identified
and found to be fit for purpose
The British Polio Fellowship is
pleased to throw its support behind
PoPSyCLE. Ted Hill has already
been in touch with John McFarlane,
the President of the EPU to confirm
his support, and indeed offer office
space and clerical assistance for
the project at our new Watford
offices.
To help this excellent project
advance, the EPU need your
support. The British Polio
Fellowship are already doing all
they can as an organisation, and
now we ask members to do all
they can too – it is time to act now,
before it is too late.
27
mobility matters
Travels with my wheelchair Part 10
These boots are
made for walking
Orthotics! For many of us a necessity that allows us to enjoy an almost normal
existence. But it’s not always easy to get good quality, well-fitting orthoses.
Poor fitting boots, shoes and callipers can make
our lives a misery, not to mention give us a deal of
discomfort and a restricted lifestyle.
Part of ensuring that you end up with comfortable wellfitting orthoses is to have a good, consistent relationship
with your orthotist. It’s important that each time you
need to see an orthotist you see the same person. That
way, they are more likely to build up a knowledge of your
needs and how your condition may change over time.
They can also give advice on what adjustments may
improve the way you walk or the amount of wear there
may be on your orthoses.
That was the situation for many of us for a number of
years – until reorganisation within the health service
meant changes to the orthotic service – and not for the
better.
In my own case, I was really lucky to have the same
orthotist for more than twenty years. During that time I
had no problems with the fit of either shoes or callipers
and I suppose I became a bit complacent. Then, horror
of horrors, the orthotist who had served me so well for
so many years had retired. It was really from that point
that my own orthotic problems started.
While I was lucky enough to see the same replacement
orthotist for a couple of visits, he admitted that because
of changes to the orthotic service, he would be leaving
the firm who were currently supplying my footwear etc.
From that point on, I rarely saw the same orthotist twice,
and they all seemed very young and inexperienced and
didn’t have much interest in how the fit of my orthoses
might be improved. As a consequence it has been
a few years since I last attended the hospital to be
assessed or measured for anything new.
However, this has not altogether stopped me from
having new footwear – more particularly new boots –
and I mean proper long boots, not something finishing
at the ankle which had been the only option the NHS
seemed willing to consider as an alternative to shoes.
28
Admittedly in order to get
what I wanted I did have to
go outside of the NHS, but
I believe that my new boots
will prove worth the money
that was paid for them.
In the midst of a snowy
January, we arrived safely
at Tony Slinger’s Wetherby
workshop, and had a further
chat about what I wanted in
my boots – colour, style etc
and he took casts of my legs. And then came the news
– it was a considerable cost, with half the total required
as a deposit. There would then be a six week wait
before a trial fitting would be required. As the time for
this drew nearer, I was getting more and more excited. I
also wondered if they would live up to my expectations.
After all this would be my first pair of long boots – ever!!
Right on cue, Tony phoned to let me know that the
boots were ready for their trial fitting. Fortunately only
minor adjustments were required and we fixed a date for
collection – a mere ten days from trial fitting. I could not
believe I was finally going to have my boots.
I can’t thank Tony enough – not just for his skill in
making the boots, but understanding how Polio affects
legs and feet and working to find the best solution.
Yes, he was well paid for his work, but he offered a
service the NHS either could not or would not provide.
I would heartily recommend him and his work to
anyone considering looking beyond the NHS for good
orthopaedic footwear. They’re not cheap, but, if you
want good fitting quality footwear, Tony Slinger may
just be the answer to your prayers. He was the answer
to mine and I’m already thinking about when I can get
another pair!
Georgina Hay
Paisley Branch
fellowship merchandise
British Polio Fellowship
scarf and tie
Discover our very latest collection of accessories featuring a high quality tie and
matching scarf.
Whatever the occasion, our new selection of branded accessories make stylish gifts and the
perfect everyday essentials.
How to order
By post: See form overleaf
Order Line: 0800 043 1935 (open 9.00am to 5.00pm Monday to Thursday,
9.00am to 4.00pm Friday) Order online: www.britishpolio.org.uk
29
fellowship merchandise

British Polio Fellowship
scarf and tie
Choose the number of scarves and ties that you would like to purchase and fill in the table below.
Ensure you complete your full name and address in the delivery section.
Item
British Polio Fellowship Poly Silk Tie
Quantity Cost
£9.99 each
Total
£
British Polio Fellowship Poly Silk Scarf
£9.99 each
£
137x24cm
Subtotal £
Donation £
Total £
Freepost
30
fundraising news
Sarah Evans – Prudential Ride
London-Surrey 100
mile bike ride
I have been accepted a place in the Prudential Ride London-Surrey
100 mile bike ride which is on Sunday 31 July 2016 and I would love
to raise money for your charity.
My father had Polio when he was a
baby in the very early 1950s and is
a member of your Fellowship, so it's
quite a personal one for me.
In terms of coverage for yourself
before and on the day, I know
you mentioned that it'll be on your
website, Social Media and also in
your May bulletin. Virgin Money
Giving is the official fundraising
website for the Prudential Ride
London-Surrey 100 so more money
goes directly to you as it 100 per
cent not-for-profit. I'll set up a
fundraising page in due course and
let you know the link along with a
photo of myself!
I am of course happy for you to do
a follow-up after the event. I live in
Abbots Langley so I'm not far from
your office in Watford so I'll be happy
to come in and see you if needs be.
Let me know next steps and what
you need from me, I'll look forward to
hearing from you soon.
foundations
We would like to thank all of
the trusts and foundations who
have supported The British Polio
Fellowship this year, including
the following trusts who have
supported us in recent weeks. Their
generosity is greatly appreciated
and instrumental to the current and
future work of our organisation.
Sovereign Health Care Charitable
Trust
Sir John Eastwood Foundation
Slater Trust Limited
Raymond Shaw Foundation
Kind Regards
Sarah Evans
Rind Foundation
Thank you for your support Sarah.
We have a British Polio Fellowship
Polio shirt for you and we would love
to welcome you to our Watford office.
Weinstock Fund
Ed.
All the information about the event is on the following link here
https://www.prudentialridelondon.co.uk/events/100/.
Donations
from trusts and
Fredmill Trust
Arthur & Audrey Silkin Charitable
Trust
Bruce Wake Charitable Trust
Gamma Trust
31
fundraising news
Developing signature relationship
with local business
The British Polio Fellowship is announcing a new partnership with local business Signature Estate
Agents, in a move that will see the near neighbours collaborate on a number of initiatives in 2016.
Gloucester 77 years to the day since
the charity was founded in 1939.
“The British Polio Fellowship is
a very good cause and we are
happy to welcome them to Watford
and offer our support,” said
Alan Maher, Valuation Manager
at Signature Estates. “They are
literally five minutes’ walk away
and I’m sure they will not regret
moving to Watford. We benefit from
superb transport links, and all the
advantages of being so close to
London and I’m sure the charity will
go from strength to strength here.”
The news follows the opening of a
brand new Central Office in Watford
on 29 January and is designed to
help the charity offer support to the
120,000 people in the UK living with
Post Polio Syndrome (PPS).
The early stages of the relationship
will now see Signature include The
British Polio Fellowship logo on their
leaflets, display collection tins in their
offices and help promote the charity
in the local community while they
settle into their new Central Office.
“When we moved into our new
office, we discovered Signature
is just around the corner from us
and we are delighted they have
decided to offer us their support,”
said Kripen Dhrona, Marketing
and Communications Officer for
32
always keen to develop links
with business and welcoming
a new partner to our family of
supporters is very gratifying.
The British Polio Fellowship. “The
backing of local business means
a lot to us as we move to a new
location and we are grateful to Alan
and all at Signature for all their help
and for offering The British Polio
Fellowship such a warm Watford
welcome.”
The custom designed offices offer
facilities for staff, meeting rooms
for members to come in and meet
with the Support Services team and
room for expansion – in particular
space for Regions and Branches
who may need a venue to host their
meetings.
“The British Polio Fellowship is
always keen to develop links with
business and welcoming a new
partner to our family of supporters is
very gratifying,” added Kripen. “I’m
sure Signature’s support will prove
a great asset in our efforts to deliver
our message, raise funds and
advise the charity on the best ways
to maximise the asset we have in
the form of this new building to best
advantage.”
The British Polio Fellowship saw its
new home formerly opened on 29
January by HRH The Duchess of
fundraising news
Giving by
text is just
so easy
You can always make a
donation to The British Polio
Fellowship from your mobile
phone, just follow these simple
steps:
Text: BRPF39 £ (amount you wish to
donate), maximum amount of £10.
To: 70070 It’s as simple as that!
The amount you have donated will
then be charged to to your mobile
phone account.
In memoriam
We would like to offer our sincere condolences to the families and
friends of the following people:
Mrs May Green
member
Lancashire
Mr Brian Hart
member
Northamptonshire
Mrs Eileen Southern
member
Hertfordshire
Mr Thomas Wilson Smith
non member
Cumbria
Mr Kenneth Raymond Clarke
member
Inverness-shire
Mr Ivan Robin Horrex
member
Middlesex
Mrs Marian Grace Grimsey
member
Norfolk
Ms Gwendoline Joan Tilley
non member
Surrey
Mrs Greta Esther Howard
member
London
Mr David Arthur William Crowley member
Wiltshire
Mr Laurence Pears
member
Essex
Thank you to everyone who has made a contribution in their memory.
If you would like to make a donation in memory of a loved one, please
contact Linda on 01923 281 091 or email linda@britishpolio.org.uk
Give as you live
As The British Polio Fellowship is registered with Everyclick, when
you do your online shopping at selected stores, around 3-4 per
cent of the cost of your total shop will be donated to The British
Polio Fellowship.
In some cases this could be more
as the amount is dependent on the
discount that has been agreed with
the supplier.
There are over 3,000 stores
participating in this scheme, such
as John Lewis, Waitrose, M&S,
Amazon, Debenhams and many,
many more.
All you have to do is visit the
website www.giveasyoulive.com
and start shopping. But don’t
forget to nominate The British
Polio Fellowship as your preferred
charity.
33
Support services
Putting old orthotics
to good use
Bob Osborn outlines some of his work with Rehabilitation
Worldwide in supplying used orthotics overseas. These items
are helping to transform lives in other parts of the world and
members with unwanted orthotics can donate them to a very
worthwhile cause.
My connection with Rehabilitation
Worldwide began in 2012 shortly
after my wife Rosie died of cancer
having been living with the effects of
Polio contracted in 1949.
I phoned the local cottage hospital
to ask when they would like me
to return, for recycling, various
callipers, shoes, walking sticks and
crutches that had accumulated over
the years. “We don't want them. Put
them in the bin” was the reply.
My reaction was no way there must
be someone who could make use
of them.
A Google search found Uganda
Polio Project (UPP) based in
Nottingham sponsored by the
University Hospital to study the
economic benefits of helping
disabled people in Uganda to stand
up and take a productive part in the
community rather being beggars or
economically dependant on family
or charity. UPPs‘ reply to my enquiry
was “Yes please, can you bring
them to our warehouse?”
The warehouse was occupied
by National Police Aid Convoy
(NPAC) who allowed UPP to
store their collected donations
until there was enough to fill a
40ft container prior to shipping
to Uganda followed by a team
34
Bob’s bike
loaded with
just some of
the old, no
longer used
orthotics he
helps collect
for Uganda
Polio Project.
of clinicians, orthotic specialists,
physiotherapists and technicians
to assess, alter equipment, fit it
and train Ugandans with Polio and
other disabilities how to use the life
transforming equipment.
I was just in time to be involved
in the last year of the three-year
project in 2013. (Facebook has
footage of their work)
During 2014 the organisation
achieved charity status having
been renamed as Rehabilitation
Worldwide to enable expansion
into other countries while
collections continued from orthotic
manufacturers, hospitals, people
who heard about the project by
word of mouth and a mention in
the bulletin.
That mention resulted in a call from
Central Office about a gentleman
in Orpington who had calliper and
some sticks to donate. As I would
be returning from a motorbike
camping weekend near Brugge in
Belgium shortly, a small diversion
would be easy from Dover to my
home near Market Harborough.
When I arrived I was asked if I
would like a wheelchair as well?
They are not that heavy and fold up
- so why not?
This year myself and another
Rehabilitation Worldwide Trustee
are piggy backing on an NPAC trip
to Zambia to assess the possibility
of a full scale expedition in 2017, we
have sent 80 packages of donated
equipment to Lusaka in an NPAC
container as a start up and hope
to establish working contacts in
hospitals in Lusaka.
Bob Osborn
If members of The British Polio
Fellowship would like to donate their
old equipment to this project please
contact the Support Services team
at Central Office.
Support services
Welsh Neurological
Alliance Conference
On Thursday 14 April, Head of Support Services Ahmad Butt attended the Welsh Neurological
Alliance conference in Cardiff.
In addition to having a stand
at the event, Ahmad was busy
networking with other specialists
in the neurological field and
investigating potential links with new
organisations and how they and
indeed The British Polio Fellowship
can best help each other.
Entitled ‘From the Lab to the Living
Room’ the conference focused
on the benefits of co-production
in research into neurological
conditions. We all know that
neurological conditions like PPS are
low in terms of public awareness
and tend not to receive the funding
levels they deserve, so coproduction of research makes a lot
of sense.
The event featured Professor
Jon Bisson, Director of Health
and Care Research Wales who
addressed the floor in the morning
on ensuring that the public are at
the heart of knowledge creation and
mobilisation, while the afternoon
included Michelle Price discussing
the development of patient reported
experience. Isabelle Abbey-Vital
from Parkinson’s UK delivered
a lecture on Patient and Public
Involvement – supporting a future of
better research.
“The conference was an important
event for us as we look to
develop strong bonds with other
organisations who share our values
and determination to help those,
including so many of our own
members who live with neurological
conditions,” said Ahmad Butt at
the end of the event. “The work
of our own Expert Panel on the
new Post Polio Syndrome guide
demonstrates the value of patient
reported experience and our
PPS day campaign has public
understanding of PPS at its heart.
We can take a lot of positives away
from this conference and reaching
out to colleagues and organisations
who share some of the same
challenges that we do can only help
us deliver greater recognition for the
neurological condition that is PPS.”
The event recognised that work
undertaken in a lab must ultimately
reach the living room if it is ever
going to benefit those living with
neurological conditions and high
on the agenda and in some of the
workshops were outcome measures
for stroke and other neurological
conditions in Wales. The British
Polio Fellowship knows from last
year’s PPS Day in Wales that many
in the country are still living with
Polio and PPS and continue to need
a support structure.
“We at Central Office do recognise
that many members are in need of
ongoing support and at events like
this we can discuss best practice
with other experts and ensure we
are doing everything we can for our
members and look at introducing
new initiatives if we believe they will
be of value.”
The British Polio Fellowship will be
attending a number of events in the
coming weeks and months aimed
at delivering greater awareness,
including among medical
professionals. The Central Office
team are next attending the Primary
Care Show at the Birmingham NEC
from 18-19 May. See page seven for
more information.
35
support services

Information available from
Support Services
In addition to the information and support we provide over the phone, the Support Services Team also produce 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 items below. All leaflets are free except Post Polio Syndrome: A practical guide.
PPS
Post Polio Syndrome: A practical
guide (£5 + £2.50 P&P)
Post Polio Syndrome: An
introduction
Pacing for Activity & Exercise
List of Healthcare Professionals
Going Into Hospital
Cold Intolerance
Complementary Therapies
Medication
Palliative Care
Orthotics
List of Orthotics Manufacturers
Orthotic Services
Callipers and Insoles through
the NHS
Orthopaedic Footwear through
the NHS
Problems with Footwear and
Orthoses?
Orthotics and Surgical Footwear
thro’ the Private Sector
Benefits
Useful Organisations
Contact List
Welfare Rights, Benefits & Legal
Other Advice & Information
Polio & Post Polio Syndrome
Organisations
Other Health Matters
Employment, Leisure & Interests
Transport, Mobility & Equipment
Life, Home & Care
Grants & Funders
Other (Please state and we will
try to find!)
Dental Care & Anaesthesia
Disabled Facilities Grants Guide
BPF Support Services
Disability Living Allowance
– Guide to filling in the form
(upgrades only)
..........................................................
Attendance Allowance – Guide
to filling in the form
..........................................................
Healthy Eating
Swallowing Problems
Pain & how to manage it
Breathing Problems
Post Polio Syndrome - a guide
to management for healthcare
professionals
..........................................................
..........................................................
‘PIP Guide’ Guide to Personal
Independence Payment
Please send this form to Support Services, Freepost, The British Polio Fellowship.
Phone: 0800 043 1935 Email: info@britishpolio.org.uk
Name................................................................................................................................................................................
Address.............................................................................................................................................................................
.......................................................................................................................Postcode....................................................
Tel............................................................................................................................Age....................................................
36
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!
members’ letters and views
Staerr
Lett
Dear bulletin,
I have attended the local Clinical Commissioning Group Heywood, Middleton and Rochdale since they
were formed nearly three years ago.
All areas have these groups and
they will also have an Open Forum
when questions about local and
national healthcare may be asked.
I would encourage local groups to
make time to go and challenge their
knowledge of the existence of PPS.
The following is the question and
then the statements that I made to
the meeting at the Open Forum.
This Forum is a time that allows
the public to ask questions about
healthcare issues but not personal
issues.
I began by asking all who attending
of their awareness of Parkinson's
disease followed by the same
question in regards to PPS, all 16
knew of the first condition and two
of the second! I was not surprised
as I have had problems one way
or another in all sorts of areas
including the original diagnosis
which took some eight months.
I then made the following points;
Diagnosis is difficult as there
is no definitive test for PPS it
is found by eliminating other
conditions
Largely unknown in all aspects of
healthcare including Physios etc
Can be difficult when dealing
with insurance for travel and car
etc. and I have had problems
with the DVLA
I informed them of the new
guide to PPS provided them with
copies and that it was available
on the website of The British
Polio Fellowship
One thing I didn't mention and
would do in future is the fact 80 per
cent of Polio sufferers develop PPS.
The chair of the meeting Dr Chris
Duffy actually said that he had read
that there had been an outbreak in
Greece. It’s possible that some of
those entering Europe will have had
Polio and may then develop PPS in
the future.
20 per cent of those living with
PPS develop fasciculation which is
what happened to me and meant
I was sent to the neurologist much
earlier than might have happened
otherwise.
I hope this is helpful and if anything
comes to the surface I will let you
know I will also forward the reply
when it comes.
Thanks
Jane Rickards
(aka Elizabeth)
NHS Heywood, Middleton and Rochdale Clinical Commissioning Group (HMR CCG) Chair’s responses
to public questions from 26 February 2016 Governing Body meeting.
The Governing Body acknowledged
concerns about the lack of public
knowledge about Post Polio
Syndrome, and the information
provided about the syndrome.
Dr Duffy agreed to ensure that
HMR CCG website would detail the
condition. Information about the
condition will also be distributed
with the minutes of today’s
Governing Body meeting. A link to
The British Polio Fellowship website
is included below which provides
further detail into this condition.
http://www.britishpolio.org.uk/polio-and-post-polio-syndrome/post-polio-syndrome/
37
Dear bulletin,
Reading about the Duchess of Gloucester’s visit to open our new offices in Watford (March/April 2016
issue of the bulletin) prompts me to go back in time.
of the present Duke) gazed down
upon us from one of the walls.
Conditions were Dickensian in
some respects. Visiting was one
hour per week - and most patients
were children! The ward had a nice
line in metal plates: these were
marked with the initials of the ward,
causing much merriment. Duke Of
Gloucester - think about it!
Probably like some other readers,
I was a Polio patient in the Duke
of Gloucester ward at RNOH
Stanmore. I was there for six
months in 1947/48 and recall in
this period another royal occasion
celebrated with enthusiasm in the
ward - the wedding of Princess
Elizabeth. The then Duke of
Gloucester's portrait (he was father
I made a return visit in 2004 and
was surprised to find the ward
pretty much unchanged except
that confusingly the name had
been swapped with the adjacent
female ward.
Back to the present, my Polio
was of the upside down variety,
affecting my arms. We all welcome
society's efforts to cater better
in its buildings for people with
disabilities, but it seems to me that
architects et al think wheelchair
Dear bulletin,
and were fine.
Replying to Mr Mitchell’s article on
films with Polio.
My brother and I were in
Heathergreen Hospital side by
side in an Iron Lung until our
outcome was to be very disabled
for life.
I was in an Iron Lung age nine
with my only brother aged eight in
1955. I remember it so well.
The film was black and white
by Ealing Studios and called
The Magnet, also the BBC TV
programme ‘Call the Midwife’ at
Christmas 2012, 2013 and 2014
which starred a doctor’s son who
was in an Iron Lung.
I think my brother and I caught
Polio from a dirty pond as we
were the only two kids that got
wet getting a bench out. Our two
friends, who were two twins, never
came into contact with the water
38
I remember how it felt. The mirror
where they put a comic for me to
read, drinks with a bendy straw
and having to breathe with the Iron
Lung. My parents only had two
children and our lives would be
changed forever.
Thank you for reading this letter.
but rarely much further. I am trying
(fruitlessly so far) to get soap
dispensers in our new health centre
lowered: they are mounted with
the squidger a full 150cm (in old
money that's five feet) off the floor.
Totally out of reach for me - and
indeed for many able bodied folk of
shortish stature.
Keep up the good work
Peter Mitchell
Truro, Cornwall
It is exactly your point about
“Think wheelchair but rarely much
further,” that the new Purple Hound
brand will seek to address.
Ed.
Dear bulletin,
Replying to Mr Mitchell’s
article on films about Polio.
Did David Mitchell also think
about the movie ‘Margaretha
Steiff’ (2005), about the
woman with Polio who made
the famous teddy bears with
the button in the ear; did he
see the TV-movie ‘Eleanor and
Franklin’ (1976)?
With kind regards
Thomas
Lehmann
Switzerland
Yours sincerely
Miss Patricia Killen
Plumstead, London
A letter from the Sunderland Branch to Bryan Rowley
Many thanks for the history
memorabilia sent via Bob Howell
which I received from him last week.
The t-shirt and hat is something we
cannot recall from what appears
to be a Lantern/Worthing Event.
Perhaps you could let me have
details of this event, also the
green teddy bear which again is
something you can highlight for us?
I read with interest your article in the
last bulletin – A Push for Parliament
letters to send to our MPs.
Sunderland Branch Committee
and members have all signed the
eradication of Polio and Post Polio
awareness letters which Bryan
Rowley referred to and advised in
the January February 2016 bulletin.
We have sent off over 30 letters to
date to MP Sharon Hodgson and
MP Julie Elliott – Sunderland (you
can see members holding their
letters and wearing their ties and
scarves proudly.)
We hope other Branches have
taken the initiative to sign and send
off these important letters to help
Central Office to represent Polio
members.
We all wore our British Polio
Fellowship ties and ladies scarves.
I cannot recall ever having a British
Polio Fellowship membership tie
or scarf before – something else to
add to our memorabilia!
The only constructive criticism
about the ladies scarves? There is
no British Polio Fellowship logo as
the men’s ties have?! So our ladies
comments are, the scarfs look as
though we work for a bank or as air
hostesses.
Best wishes to you and your wife.
Shirley Williams
Chairperson
Dear bulletin,
Thank you for publishing my
piece about living with Polio in
the March/April edition.
Just a couple of corrections:
It was Mr Girdlestone who was
consultant at The Wingfield
Orthopaedic Hospital – my
mistake, not the Radcliffe.
Of course my ankle was
dropped and not cropped!
The attached photographs
you might consider of interest
– myself then and more
recent!
Yours sincerely
John Legard
London
Sunderland members are proudly wearing their British Polio Fellowship scarves
and ties (although some members clearly don’t know how to wear a tie!)
39
Dear bulletin
I read with interest the profile on Steve Harley and it brought back memories of when I had the same
knee stapling operation.
In the March/April issue there was
a letter from Julie Wells who also
had the operation but a lot earlier
than Steve. I have found a picture
taken of me on my bed doing
school work, my Polio leg is the
right and the plaster can clearly be
seen on my left leg where I had the
operation, the date on the back of
the photo is 1959.
My operation was carried out at
the RNOH Stanmore and I was
under Mr James and Mr Manning.
Kind Regards
Janet Jones
Bognor Regis
Dear bulletin,
The Holiday Homes Trust
I have been a member of The British Polio Fellowship for over 50 years, and a member of the Scout
Association for even longer.
Two years ago I was invited to become a Trustee of the
Holiday Homes Trust (HHT), which although not officially
a scouting organisation, is based at Gilwell Park in
Essex, the home of scouting.
The Trust was formed in 1969 by former Rover Scouts,
led by Charles Porter who had improved his front
garden, and included a wishing well. Soon people were
throwing money in as they went by, £400 in the first year.
He had two nieces with special needs, so was aware of
the difficulty of finding suitable holiday accommodation.
He therefore decided to buy a caravan, and from these
small beginnings the HHT has grown.
We currently have eight caravans, all based at different
40
popular coastal holiday parks, which have full amenities
and entertainment. The sites have been assessed
for suitability for the disabled, and the caravans have
ramp access, and been adapted to be fully accessible,
with hoists available in bedrooms, and wetrooms with
accessible showers.
If you think you may like a holiday at one of our sites
please visit our website at www.holidayhomestrust.
org, or telephone Jo and Marion, our very helpful
administrators, on 020 8433 7290/7291 or email
scout.holiday.homes@scouts.org.uk
(office hours are 8.30 am to 1.30 pm Monday to Friday).
Alan Foster
advertising
Keep in touch with us
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41
God called me
to join the CMA!
I am not your average CMA (Christian Motorcyclist Association) supporter, but I am sure God called me
and decided I had work to do.
got married then had two children,
now grown up. I have always been
a Christian and went to Sunday
school. My Nana told me just trust
in God and he sorts everything out.
Anyway I am now on my own in an
OAP bungalow in a Leicestershire
village. I decided about five years
ago to get an old Nippi. I had just
become a silver surfer and found
this thing on eBay. It was up in
Derbyshire near to where they
are made. They are a Piaggio
scooter cut in half and with an
extra wheel added to make a trike.
It is driven from a wheelchair or a
seat. I thought it would be more
economical to run than a car.
It was black 50cc and looked like a
coffin on wheels I thought. Anyway
it seemed a good idea at the time.
I got wet through when it rained
and it fused my electric wheelchair
once, push bikes passed me and it
was forever breaking down. After a
few months I sold it and went back
to the car.
I will start at the beginning. I was
born in 1945 and at two years old
I caught Polio. I have never known
what it’s like to walk normally. Not
that it ever stopped me doing
anything. My mother always said
I decided to do something and
worked out how after.
42
I went to a normal school mostly
and at 16 was given a trike - Noddy
cars we called them. They had a
motorcycle engine and we had
great fun in them. There were
Mods with scooters and Rockers
with motorcycles and us with
trikes. I progressed to a car and
One day the Christian Motorcyclist
Association came to talk about their
work at church. They did tea and
coffee tents at bike shows and gave
Bibles out after talking to people.
They also had rides out. Very much
like my work with the Salvation
Army which I belonged to before I
moved here.
The talk ended with so there you
are, get a motorcycle and join us. I
got talking to one of them after and
said I would love to join CMA.
They cost £7,500 new and I didn’t
have anything like that kind of
money. (They do come up on eBay
very occasionally like hen’s teeth)
but were always far too expensive
and miles away and I couldn’t get it
home.
That was where God took over.
Next day I was on eBay looking
round and I suddenly thought try
typing Nippi. I did. One came up.
Just a telephone number and a
picture from the Nippi website. This
vehicle is Sorn it said. Has been
standing in a garage for six months,
hence the price. The exact amount
to the pound I sold mine for. I
glanced to see where it was and a
village on the way to Nottingham 15
minutes away came up. This was
weird. So I phoned anyway, “Why
not come and see it at least?” the
guy said. Nothing else to do so as
it was a lovely evening I went in the
car.
It was a 2006 model, much newer
than my old one. It had an 80cc
engine, more powerful than mine
had been. Did 50mph. He and I
went over to the garage and he told
me. “It’s got the new rain cover so
you won’t get wet and a sat nav so
you won’t get lost.” He opened the
garage door and there it was the
colour, red. “I can deliver it at the
weekend you only live up the road,”
he said. Well I thought I made a
promise to God in church and this
is what I wanted. I put £20 deposit
on it and said I would pay him when
it was delivered.
Now my son is mad on motorcycles
and loves sorting his out so I
thought bet he could soon get that
working. I phoned him when I got
home. Guess what - I bought a
motorbike. Silence.
“Mother why couldn’t you get a
mobility scooter like everyone else?
Do you know how much trouble I
had getting my old bike I did up on
the road?“ (This is the bit I can put
in print here). “How are you going
to get it for an MOT, you also want
a bike jacket, crash helmet and
insurance. I don’t have the time.
I bet it’s a right load of junk. Why
didn’t you let me go and see it?”
“Well I’ve bought it now,” I said.
“And I’ll sort it myself.”
It’s got the new rain cover so
you won’t get wet and a sat
nav so you won’t get lost.
The guy duly arrived at the
weekend with the log book and
MOT exemption certificate. Nippis
don’t need an MOT! It looked a
bit like a bubble car. A Nippi does
100 miles to the gallon much
cheaper than the car and much
more reliable. This one seemed
much easier to drive and now I just
needed a bike jacket. I put an ad in
the Co-Op and next day hey presto
a chap phoned with a lovely jacket
and a helmet for £20. So I phoned
the CMA up and they could not
believe the story. Be careful what
you wish for. I wrote it up and they
printed it in the church magazine.
It soon attracted the local lads with
scooters and they said it needed
a paint job and they offered. It was
red so they did a great paint job
adding black spots and a face to
make a ladybird.
I went to the next meeting at Thorpe
Acre Church and was greeted
with, “Of all the people in that
congregation you were the last
person we thought would ring up
and say I’ve bought a motorcycle
and want to join the CMA.” Well
since then I’ve been out with them
to local bike rallies If nothing else
it attracted a crowd and got folk
talking. Then we went to a Rock
and Bike festival at Stanford Hall. I
had decided to sleep in the car and
Andy my son had given me a plug
adapter to charge the wheelchair.
By this time he had decided to let
mother get on with it. I had never
been to a rock festival. The car was
not very comfy but I got a few hours
sleep that night. I loved meeting
people and chatting in the Holy
Joe’s tent.
I got up at 6.00am and started
work again in the tent. I decided
the chair battery could cope with
a last look round and I bought a
black leather waistcoat and a few
badges and got the lady there to
sew them on. There was a great
atmosphere and I loved every
minute. However the car charger
didn’t work and the battery was
nearly flat. Then I spotted the NABD
tent (National Association for Bikers
with a Disability) were a few stands
away and they had a wheelchair
on charge. I went in and told them
I was from the CMA tent. They
offered to charge mine if I promised
not to try to convert them as they
were all Pagans.
I told CMA where I was going and
they sent me armed with two Bibles.
I sat and charged it for two hours. I
talked to them and got very involved
with other visitors to their tent and
yes I did give the Bibles away.
Cont
▼
▼
I had had a Nippi motorcycle a
while ago. Now if I could find one
on eBay for the same price I sold
mine for and it was a bit more
powerful so cyclists didn’t pass
me and I could keep up with the
traffic, and I didn’t get wet and lost,
I promised I would join the CMA.
43
Cont
▼
▼
It was a brilliant weekend. Lots of
stands, such interesting people
everyone so friendly.
I also did the Help for Heroes
weekend and a couple of church
visits. The Nippi caused quite a
stir and I was not at all what they
expected but I got involved with a
few old ladies like myself who asked
where they could get Nippis. I have
seen some folk on mobility scooters
and dread to think of them on a
motorcycle!
Two weeks later I went on holiday
with the Disabled Adventure Club I
help to run. I told them at the CMA
meeting. I was told to take along
Bibles and leaflets and wear your
jacket when you go to church. By
now it had a white cross on the back.
I packed the suitcase and looked at
the black waistcoat. Could I really
go into a strange church with that
on? No, I shut the case. God had
other ideas. I went in the kitchen to
make a pack up for next day and
saw this little white bag under the
sink. I picked it up and found a
badge inside I had bought at the
bike festival. How it got there and
had been there for a few weeks I
don’t know. I read what the badge
said “These are my church clothes”
I sewed it on there and then and
packed the waistcoat. Off I went.
44
On the Sunday I wore it to church.
The vicar asked what it was for and
I told him about the CMA. He had
never heard of it and asked me there
and then to give a talk after church
over tea and biscuits. I told them
all about the CMA and answered
questions for nearly an hour. What
if I hadn’t worn the waistcoat?
Two days later we visited Exeter
Cathedral. I wore the waistcoat
again. I got greeted with “Your
members came here and set up a
stand and we’ve run out of Bibles
now so please can you get some
more?” Yes, I promised I would get
some sent.
congregation. I ended up next to an
Asian lady. Over coffee she told me
she had formed a group for Asian
Christian ladies. They met at her
house every week. She now found
it too much as they had so many
members but no money to hire a
room. Now I have Asian friends who
go to Belgrave Baptist church. I also
know Pastor Steve who is Asian.
I was able to give her his phone
number. She phoned him and he
offered them a room at their church.
She phoned me the next Friday and
we both said of all the people there I
was probably the only person able to
help her. God was at work.
I love the CMA and the work we do.
I would love to go on the rideouts
I thought but the Nippi has a top
speed of around 40 mph so I can’t
keep up. A few weeks ago I had a
look on eBay again and there was
another Nippi, same price but had
scratches down one side bald tyres
and looked a sorry state. This was a
125cc engine though. Two years old
and would be worth around £4,000
easily when sorted, this seemed too
good to be true. I phoned the dealer
who had it for sale. He was in Cardiff
but was coming to London with a
trailer, so offered to deliver it. Was
God at work again?
My son well he came on a few
breakfast runs and to bike shows in
the end. I think he decided to see
what I was up to. He soon joined in
and though he’s not a member but
he has lots of fun.
The Nippi caused quite a stir
and I was not at all what they
expected but I got involved
with a few old ladies like myself
who asked where they could
get Nippis.
I am now sure on many occasions
God uses me. For instance a
few weeks ago we went to King’s
Church. There must have been
around 200 in the congregation.
As always if we are not doing the
presentation we mix in with the
Last Sunday was the Palm Sunday
Egg run around a hundred bikes,
a service in the local church then
people brought us eggs and
we donated eggs for children in
hospitals care homes etc. We
advertised for a local firm with a
van to take them for us. The local
undertaker offered a hearse! We get
waved out of the village with palm
branches. We get to the next village
though and everyone thinks it’s a
biker funeral. We finish at a bikers
pub and meet more folk there.
A great day.
I do feel I have a job to do though
and after working through the
workbook I become a full member.
The CMA is not a bike club but a
Christian Ministry to motorcyclists.
I’m not the fastest biker but I think of
the tortoise and the hare, I get there
in the end and will go where God
sends me.
Mary Smith
East Midlands Branch
o
e
Our charity partn
THE CORDWAINER
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I am Philip Taylor
• I live with the effects of Polio.
• 30 years in the trade.
• Member of The British
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My promise:
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45
branch and regional news
Scottish Region
Edinburgh Branch
It’s the first Tuesday of the month so it must be Kurling at the Edinburgh Branch!
1
2
3
4
5
1. Christine firing off another great stone
to the dismay of Izzy
2.I calculate the angles to work out the
reduced friction due to Ralf oiling the
ball bearing prior to the start
3.Heather was also in great form
4.Roy starts the final round will he hold
on to his tenuous lead?
5.Also a chance for a good chat
6.Roy doing the count
7.Jean (last month’s winner) passes the
trophy to Roy
Despite me using trigonometry,
calculus and doing fast fourier
transforms to compensate for the
oscillations of the ball bearings I still
came last but it was great fun.
46
6
At the Easter ‘drop-in’ meeting
members brought their exotic
Easter bonnets. There was of
course a prize!
7
Planning is advanced for the
branch outings to New Lanark
in June and to Loch Lomond in
August.
Scottish Region
A social whirl at the
Edinburgh Branch
To celebrate Easter the Edinburgh Branch ‘Drop in’ had a themed get together with assorted Easter
related nibbles including Hot Cross Bun popcorn!
The highlight was the Easter
Bonnet Competition, our
reputation as an equal
opportunities group was proved
by the fact that men were first
and third in the competition.
1Ralf in his winning bonnet with
a fetching matching yellow boa
celebrates his victory
2Anne in her exuberant red/
pink and white creation proudly
holds the cup for coming
second
3John is congratulated by
Helena for third place. He
is wearing a sky blue cap
loaded with a mound of eggs
surrounded by a clutch of
chickens
We all agreed the Easter get
together had been a good laugh.
4The subsequent week the
Edinburgh Branch Kurling
Group had their first ‘annual’
lunch outing. (We enjoyed it so
much we decided to do it every
year that’s why it is ‘annual’)
1
2
As well as the future monthly
‘Drop in’ and ‘Kurling’ meetings
we have the Friday 24 June
outing to New Lanark and the
Friday 12 August outing to Loch
Lomond.
As I said it’s a social whirl in the
Edinburgh Branch.
3
4
Alex Spence
47
East Midlands
Northamptonshire Branch
The Chairman Peter Mains
welcomed new members
amongst the nineteen attending
the March meeting which was
the best attendance for the
Branch to date.
He reported that the Branch had
been represented at The British
Polio Fellowship National Games
for the first time since the Branch
was reformed. The three members,
who had won their places at the
East Midland regional games. He
congratulated Mike Jackson on
winning a second place medal for
New Age Kurling, having beaten
competitors from Branches
throughout the UK and Northern
Ireland.
He was pleased to report that links
with other Branches was providing
the opportunity to meet and
participate in events. Invitations to
join coach tours had been received
from both the Leicestershire and
Lincolnshire Branches. At the April Branch meeting
Ahmad Butt, the Head of British
Polio Fellowship Support Services
team, would be attending to give a
presentation on PIP, a subject that
was of major concern to a number
of the Branch members. The AGM
for the branch would be on 24 May
Carl Weininger, the Branch fund
raiser and activity organiser,
reported that the activity survey
carried out with members had
identified a number of potential
events for the coming months
which he was currently planning.
He hoped to include in this year's
programme a day coach tour to the
48
In many cases the younger
GPs are not fully aware of PPS
and its symptoms.
East Anglian coast with a visit to
Sandringham en route.
He was also evaluating sailing trips
on disability access boats and a
barbecue and games afternoon
in the countryside. Following the
success of last year's Branch
Christmas party he was currently
checking out venues for this year.
He also advised Branch members
that following the successful
promotion of the Branch at the
Northampton Council sponsored
‘International Day of People with
Disability in 2015’ a decision had
been made to repeat this event
on Saturday 3 December at a
prominent location in Northampton
Town Centre, at which the Branch
would have a promotion and
information stand. He was currently
applying for a grant to cover the
cost for this event. The Branch
Facebook page entitled Northants
British Polio Fellowship and
Disabled Associates and Carers
had over the last two months
generated feedback from other
Polio groups and organisations, as
well as individuals.
The Welfare officer Mike Jackson,
reported that over the past two
months he had been assisting
members in respect of PIP
supported by the headquarters
Support Services team.
He was seriously concerned that
in a number of cases reviews by
assessors appeared to totally fail
to recognise the short and long
term disability challenges for Polio
survivors.
North West Region
Merseyside
Branch
In many cases they disregarded the
fact that dependent on muscle fatigue
the ability to walk a distance on one
day to another can vary significantly.
Hopefully with assistance we can
reverse decisions at the appeal stage.
All the members of the Merseyside Branch of The
British Polio Fellowship would like to thank:
Beryl (Chair of the
Merseyside Branch) and
George Bretherton, Bob
and Kathy McCarthy and
their ‘grandchildren’ for
giving up their spare time
to raise money for our local
Branch at the table sale
held at Greenbank Centre,
The PIP information recently produced
by The British Polio Fellowship has
been very useful.
Mike reported that another challenge
for branch members was convincing
their GPs that they may have
developed PPS, and despite their
concerns they were being treated for
similar symptoms with adverse side
effects. In many cases the younger
GPs are not fully aware of PPS and
its symptoms. He reported that with
the assistance of The British Polio
Fellowship Group information, over
the past two months, three members
had, using The British Polio Fellowship
information, convinced their GPs to
refer them to Neuorologists. The latest
British Polio Fellowship information
booklet ‘A guide to management
for health care professionals’ has
already been passed to some GPs in
Northamptonshire. Another challenge!
Peter Mains Chairman can be
contacted on
Telephone: 01604 756936
email: petermains1@hotmail.com
Liverpool in March.
Also a big thank you to
all the other unnamed
stalwarts who give up their
time freely throughout the
year to raise much needed
funds to keep this Branch
active and vibrant for its
membership.
Monthly Branch meetings are held
in the community room at
Tesco Supermarket, Victoria Park,
Tunnells Mill Lane, Wellingborough
NN8 2EF
Dates for next meetings
Tuesday 24 May 2.00pm
Tuesday 21 June 2.00pm
49
Home Counties North
King’s Lynn Group
Leader’s AGM Report 2015/16
Held at the Deer’s
Leap, King’s Lynn on
14 March at 2.00pm.
King’s Lynn Polio
Group has had a
busy and active year.
As well as the regular hydrotherapy
sessions at Churchill Park School,
we have visited a number of
attractions and venues.
One of the group’s highlights were
the two occasions that we able to
enjoy a private garden tour with the
Head Gardener at Sandringham.
To flavour the contrast between
the season of spring, summer and
autumn was majestic and quite
breathtaking; seeing the contrast
of nature’s colour and growth shift
within so many varying flowers and
trees.
Also within the Sandringham
grounds, we enjoyed a tour and tea
at Park House which is a disabled
friendly hotel run by the Leonard
Cheshire charity. We had a peek
into some of the guest rooms,
including one of which it is reputed
to have been where Princess Diana
was born.
We visited Spalding and all it has
to offer, a combined venture with
the Lincoln Polio Group. We had
a guided tour of the Chainbridge
Forge Museum, then some of
us took of the Water Taxi back
to Springfields Shopping Outlet
50
Centre where we met up with
members of the King’s Lynn
and Lincolnshire Group for a
well-deserved cup of tea and
refreshments.
Another outing took us to Wisbech,
where we had a guided tour of
Elgood’s Brewery and a wander
around their incredible garden and
maze, in which a few of us nearly
got lost! Lunch comprised superb
food and service.
During the summer months we
enjoyed a cream tea at Joella’s
home, all proceeds of which went
towards Polio Month. Also Robin
donated a substantial amount
of money collected during a
significant birthday event. In August
we spent a superb afternoon at
Sue O’Brien’s home savouring
scrumptious open air cooked food.
Later in the year a few of us
ventured to Fakenham Racecourse.
Oh the temptation to have a flutter.
It was a bit chilly but a good day
out. More fluttering took place
when we enjoyed a night out at
the Peterborough Greyhounds.
We feasted on an excellent meal
while watching the action through
panoramic windows.
Whist the majority of us have
benefited from generally good
health, unfortunately some of us
have endured a few difficulties.
Trudy fell and fractured her leg, and
is awaiting a second op. Heather
has had health issues and will be
laid up for a while longer. Christine
has had problems with her eye and
Sue had to undergo an operation
on her tummy, and then to crown
it all Lynn, Alan’s wife and group
run-about, had an argument with
Jack Frost and came off worst. The
group extends best wishes to all
for a speedy and full recovery, and
that everyone else stays in good
health.
And so to 2016-17. Alan is putting
together a programme of activities,
events and visits for discussion
and approval. We also plan to have
a recruitment drive and to solicit
ideas for other activities.
The Group contact is Alan Hall
on 07903539018 or
poliokingslynn@gmail.com
Home Counties North
Enjoying a traditional afternoon tea at
Dobbies Garden Centre, King’s Lynn.
L-R Reggie, Chris, Christine, Jim,
Trudy, Alan, Lynn, Janet (and behind
the lens) Joella
Social Programme
Date/Time
Activity
Place
14 March 2.00pm
AGM
Deer’s Leap
23 March 6.00pm
Hydrotherapy
Churchill Park School
18 April 12 noon
Lunch
Castle Rising Tearooms
27 April
Hydrotherapy
3 May
Fakenham Races
Fakenham Racecourse
25 May
Hydrotherapy
26 May 9.30am
Mobility Roadshow travel is approximately 2½ hrs. Depart for show approximately 4.30pm
which gives 4½ hours at the show Silverstone Race Circuit
TBA June
Sandringham Tour guided by Head Gardener
Sandringham House Gardens
20 June 10.00am
Day Trip - gardens, owls, lunch, pets, aquatics, shops, spa, gifts,
sheds, ornaments…
Baytrees
26 June 1.00pm
Music in the garden– a charity event for the National Kidney Federation
also supporting Polio
Robin’s Garden, Nothwold
22 June
Hydrotherapy
18 July 2.00-4.00pm
Joella’s Polio Month Cream Tea Party (with special thanks)
Snettisham
20 July
Hydrotherapy
15 August 12 noon-2.00pm Sue’s BBQ (with special thanks)
King’s Lynn
51
Western Region
Exeter Group
The Exeter Group
usually meets on the
second Wednesday
of the month in the
afternoon at the MS
Centre in Exeter.
In February Ahmad Butt from HQ
gave an excellent talk about PIPS
and Motability. He did a fantastic
job answering the many and varied
questions put to him. What many of
us learned was that we now need
to say “No, we cannot do that!” It
was obvious that many of us use
wheelchairs, scooters, walkers and
sticks to get about.
What was less obvious was
the gadgets we have at home,
particularly in the kitchen to help
us. Things like small kettles that
are not too heavy to lift, gadgets
for opening jars, cans and bottles.
Particular knives with easy grip
handles for chopping veg and
carving meat.
Everyone there was impressed
with Ahmad’s detailed
knowledge and understanding.
So when asked the question, “Can
you cook a meal unaided?” we
all said yes. Then when we talked
about the many gadgets we used
the answer became - no we cannot
52
cook a meal unaided we need
lots of gadgets to help us. When
Ahmad asked questions about all
sorts of daily activities he made us
think about what gadgets we used.
In my own case I need to sit down
to get dressed, and I have a stool in
my bathroom. So my answer was
of course I can get dressed on my
own, but I cannot without the stool,
a litter picker to pick clothes off the
floor and an extra-long handled
shoe horn. So the true answer
is I cannot get dressed without
assistance, i.e. the gadgets I use.
Everyone there really enjoyed his
discussion and were impressed
with his detailed knowledge and
understanding.
In March, Rebecca Colpus came
and talked to the Group. She
updated us on her work and gave
us dates of activities taking place
in the South West which she
had organised. Many of us were
interested in the talks and socials
she had arranged. Again the Group
were delighted with Rebecca and
what she was doing. She was
enabling the Exeter group to get
involved with healthcare agencies
and others, which was very good
news. Well done Rebecca.
The Group now has a busy year
ahead. As well as our normal
meetings we have a wheelchair/
scooter walk and picnic in Exmouth
beside the sea in June. In July
we plan another walk along the
tarmac granite way cycle track,
from Oakhampton to Prewley Moor
on Dartmoor. Both these walks
are open to anyone who wants to
come, just contact Gordon or Kate.
In May we have Healthwatch Devon
coming to talk and in September
the Houses of Parliament outreach
worker, by which time it’s nearly
December and time for the
December Christmas Social.
All the meetings, talks and walks
are open to anyone to come along;
you don’t have to be a member of
the Group. All are welcome.
Please contact:
Gordon Guest
Tel 01884-34867 or email
gordonguest@btinternet.com
Kate Wass
Tel 01392-851931 or email
kate@upec.co.uk
Yorkshire Region
Hull’s ‘sugar lump’ Polio outbreak
remembered 55 years on
Hull’s historic Polio outbreak,
the first in Western Europe to
be countered by the use of
sugar-lump vaccine, has been
put in the spotlight by the BBC.
Its documentary series, Inside
Out Yorkshire and Lincolnshire,
focussed on the 1961 outbreak
which saw 95 cases confirmed
among the 180 admitted to Castle
Hill Hospital in three months. Two
people died.
Reporter Emma Glasbey spoke to
two survivors of the outbreak which
was said to have passed into the
city from the docks.
Within days of the first case being
confirmed, a mass vaccination
campaign swung into action with
queues at city schools, clinics,
church halls, hospitals and
Hammond's department store.
The vaccination was given by
putting two drops of the vaccine on
a sugar lump or in a teaspoon of
syrup for infants. The sugar lumps
were provided free of charge by
Tate & Lyle. In two weeks, 385,000
people were given the vaccination.
Above: Hull Medical Officer for Health Dr Alexander Hutchison (left)
with a new batch of vaccine at William Wright Dock cold store in the
city, ready for the 1961 vaccination campaign. Picture – Hull Daily Mail.
asked by Central Office for her help
for the documentary.
The campaign involved more than
300 staff with an estimated three
times as many volunteers.
“We were unable to find current
Hull members who were victims of
the 1961 outbreak but those days
are still recalled by many in the
city,” she said. “55 years afterwards
the documentary shows what a
threat Polio was in the UK and how
history was made in Hull with the
sugar lump vaccination.
It was the first time that the oral
Polio vaccine had been used
in Western Europe for a mass
vaccination to halt an outbreak.
“I hope it reminded people of the
effects of Polio and how vital it is
to keep up vaccinations as the
generations go by.”
The British Polio Fellowship Hull
Branch secretary Pat Parker was
Yorkshire
Region AGM
The Yorkshire Region Annual
General Meeting will be held
on Sunday 5 June 2016,
commencing at 11.30am, at
Featherstone Library, Victoria
Street, off Station Lane,
Featherstone, WF7 5BB.
Joanna Watson
Hon Secretary
Yorkshire Region
53
Yorkshire Region
A very mixed day for the Yorkshire Region.
Not a big turn out but Mother’s Day and bad
weather brought numbers down to around 30.
Boccia and Kurling on two levels, one as the
entry to the 2017 National Games but also
a good practice for the up coming games.
Games of draughts and scrabble also as ‘get
match fit’ events.
The day was used as a fund raiser too with sales
of sewn items made by one of our supporters,
and our swap shop. Members bring items that
they have no more use for, on the theory that
one person's trash is another's treasure. Any left
over goods usually go to a charity shop but this
time a member was attending a car boot sale in
aid of the Alzheimer's Society, and took the left
over things after our members had upcycled the
goods on offer.
With pie and peas for tea - lots of cups
of tea, laughter and chat, it was another
good afternoon in the community centre at
Featherstone Library.
South of England
Worthing and Suss
A history of
the Lantern
The Worthing Branch President, Clare Golfer, has
initiated some research into the history of our late
lamented Lantern Hotel, which for over 50 years
was the flagship of The British Polio Fellowship.
It was built in the late 1800s when the whole area was
expanding partly due to the railway linking the town in
1845 and it was just three minutes from the sea. Our
building was called ‘Inkerman’ after the battle of Inkerman
in the Crimean war and the entry for 1903 showed the
owner as Lt. Col. George Grant Gordon CB, CVO JP,
who was equerry and controller of the household to H.H
Prince Christian of Schleswig-Holstein! He was also a
veteran of the Battles of Alma, Balaclava, Innkerman and
the Seige of Sebastapol. He must have been very socially
acceptable as he hosted, at Inkerman, a visit of Princess
Helena, the fifth child of Queen Victoria.
The building was later owned by Mrs Jamieson and in
1923 it became the Inkerman Hotel. It was again sold in
1946 and renamed the Lantern Hotel but it closed in 1950
when The British Polio Fellowship bought it for, I think,
£14500! I had always assumed that we had named it the
Lantern but it seems we just carried the name forward
from the previous owners and in due course we named
our residential home in Lytham St Anne’s the Northern
Lantern.
The Lantern was formerly opened as The British Polio
Fellowship holiday home on the 5 April 1950, by Air
Chief Marshall Sir John Slessor and no adaptions to the
property were made because of our shortage of funds.
There is a photo of a lady wearing callipers having to
struggle up the stairs to her bedroom! The price of a
week’s holiday was five½ guineas high season and four
guineas low season.
54
sex
I had always assumed that
we had named it the Lantern
but it seems we just carried
the name forward.
Installations of a lift, wider doorways
and en suite bathrooms took
some years but of course it was
eventually absolutely wheelchair
friendly.
We carried out major building works
in 1969/70 to make the building
completely accessible with new
bathrooms, wider corridors, larger
bedrooms, new kitchens and the
addition of ten chalets for residents
which were opened by Lavinia,
Duchess of Norfolk. During this
time of rebuilding the residents
were evacuated to the Northern
Lantern for 15 months.
Some ten years later in 89/90 a
second story of ten rooms were
added to the chalets and we now
had room for 20 residents and 20
guests. Sadly we were never able to
actually fill all the residential rooms.
June and Bill Finch managed
the hotel from 1967 to 1996 as a
successful friendly hotel, financially
just about breaking even but after
they retired expenses rocketed
with year on year greater deficits
until in 2003 the Trustees made
the decision that it must close,
which caused uproar among
many members and dismay to the
residents. I am sure many of us
will remember the chaotic AGM
at Walsall when the Chairman of
Trustees Mike Egan was given the
impossible task of trying to control
the meeting.
After the next Trustee election the
new Trustees reversed the decision
to close and decided to make a real
effort to make the Lantern ‘great
again’.
Bob Stephens took on the task
of raising funds (we raised
£55,000) and to try and clean up
the rooms and re-decorate the
whole premises. However after
a campaign of ‘use it or lose it’
we finally had to give in and the
Lantern closed in 2004. The next
year it was sold by private tender
for £1.9 million but the purchaser
and her bankers realised they had
slightly overpaid and we settled for
£1.7 million. It was then converted
into a first class residential care
home.
2015 was the 10th anniversary of
The Shelley as it is now called and
it really does look superb, a great
deal of money and imagination
has been used to transform it
into a luxury care home with all
the residents paying the present
market price to live there and I
understand it is fully occupied.
A booklet has been produced by
Sheren Bermejo to celebrate the
10th Anniversary of The Shelley
and this history of the premises
is taken from the first few pages,
the rest of the booklet obviously
highlights the attractions of the
present care home.
Bob Stephens
Worthing
PS
Dear bulletin,
I am the Chairman of Worthing and
Sussex Branch, Chairman of the
South of England Region and was
a Trustee for eleven years while the
sale of the Lantern was completed.
I actually led the alternative
approach to closing the Lantern,
but eventually had to agree that it
had to go.
R E Stephens
55
South of England
Worthing and Sussex
What a lovely surprise we had at the February get-together when half a dozen new members joined us to
share in our get-together proceedings and we were also delighted to welcome some ‘not so new’ members
who rarely come to our meetings.
So nice to see you all – please come again!
Our speaker that day gave a
fascinating and informative talk
on transport through the ages.
Amazing what one learns from
these illuminating talks.
Our March get-together saw the
return of ‘The weather man’. He
talked to us over fifteen years ago
at Heene Com Centre and he was
just as interesting and humorous
with his anecdotes and quotations
as he was then. Whether the
weather is cold whether the
weather is hot we have to put up
with the weather whether we like it
or not!
The highlight of the afternoon was
the Victoria Sandwich competition
which was very well supported
with eight people taking part. Sue
Milner (a great cake maker) judged
the competition and pronounced
June Finch as the overall winner.
Harry Potter Warner Bros
Studio Tour
Tuesday 28th June
Last year in the October/November
Newsletter I told you about our
visit to this amazing venue and
invited you to return a reply slip
to me if you would like to join a
group visit. I had a good response
from you so I have gone ahead
and booked the replacement
Diamond Coach which has a lift
and can accommodate five fixed
wheelchairs for the above date.
There are two refreshment areas,
one in reception and the second
you will find during your tour.
They are rather expensive so
you may prefer to bring your own
picnic. This is another chance to
join us and if you haven’t already
applied, please return slip as soon
as possible to: Mrs Gill White,
3 Tozer Way, Chichester, PO19
7LG. The cost will be £20.00 for
members and £45.00 for guests.
Times will be announced later. Just
a reminder that the post codes for
the Bluebell Walk are BN26 6FH
and for Nymans RH17 6EB.
Congratulations June for receiving
an ‘afternoon tea for two’ voucher
for Haskins Garden Centre. And
many thanks to Sue for judging,
(not an enviable task) and as Sue
said it was a very difficult decision
as there were so many excellent
cakes to choose from. Many thanks
to all those who took part. We must
certainly run this one again next
year and perhaps have even more
Polio members take part.
56
Dates for your diary
Saturday 21 May, Chichester
Flag Day
Saturday 4 June Eastbourne
Flag Day
Tangmere Military
Aviation Museum
Monday 4 July
Monday 6 June Nymans Gardens
Friday 8 July, Worthing Flag Day
Tuesday 28 June, Harry Potter
Sunday 24 July, BBQ at B&Bs
Monday 4 July, Tangmere Aviation
Museum
The Branch financial year ended on the 31 December 2015 and
after including our loan interest we made the smallest deficit,
approximately £2500 for some years.
We actually spent about our usual
amount on welfare but sadly we
lost nine members throughout
the year and therefore received
substantial donations in their
memory. Having said that, we have
had four new members in the last
couple of months.
Open to the public since 1982,
the Museum is located on the
site of the former RAF airfield
which existed from 1918 to 1970.
In the summer of 1940 RAF
Tangmere was a main sector
airfield at Fighter Command in
the frontline defence of the UK
during the Battle of Britain. We
hope you will join us for this visit
to Tangmere near Chichester.
There will be a free guided tour
if you wish and a picnic lunch
will be provided. We do have
a minibus booked but expect
those with cars to meet us there.
Cost will be £5.00 for everyone.
If you need to know more about
these outings, please ring Gill
White on 01243 789479 We
look forward to seeing you at
11.00am
Our AGM was very well attended
with Treasurer Jim Tidy giving a
financial review and our Secretary
Janet Jones remembering all of
our social activities. Bob Stephens
thanked our many helpers and
read out a congratulatory message
from the Chief Executive.
Socially we have started 2016 very
well. Our first get-together speaker
gave instructional advice on using
the Care Line, that emergency
pendant thing that you must always
wear round your neck and actually
the talk was very interesting.
The next two speakers will be
entertaining, the first is about
shopping through the ages and the
second is from the local weather
man, but I am really looking
forward to ‘My Life as a Bunny Girl’
later in the year.
Our outings for the year are
now planned. Our usual coach
was written off last year, so this
will create some difficulty. We
are hoping to visit Tangmere
Aerodrome, WW2 museum and
a National Trust Garden and
then possibly the Harry Potter
Experience near Watford. (We
could also perhaps drop into
Central Office new premises just
to see what it is like and meet the
new staff!) Our usual seven flag
days are now booked, the first one
in Horsham yielded £605 and the
second in Haywardsheath a little
under average £211, but a jolly
good start.
Bob Stephens
57
South of England
Information and Holistic Day
South East Kent - Wednesday 6 April
Many people expressed interest
in our Information and Holistic
Day and several asked that I
give them a brief report via the
bulletin.
Ted Hill was first on the bill and
gave an in-depth report on British
Polio aims and accomplishments.
Ahmad Butt, Head of Support
Services gave a brilliant
presentation on DLA/PIP including
some recent changes to certain
rules and regulations.
I think it is true to say that anyone
who has met Ted Hill and Ahmad
Butt would consider that we have
a remarkable team who are taking
The British Polio Fellowship into the
21st century with a bang, together
with everyone else involved in the
day to day running of The British
Polio Fellowship at Central Office
and our Trustees, who deal with
strategic matters.
Finance
Ted said that the purchase of
the property at Wilmington Close
would make considerable savings,
repaying its cost in approximately
ten years. The British Polio
Fellowship has also registered
for VAT which will provide us with
financial advantages.
Publicity and awareness
Good coverage of PPS Awareness
Day saw iconic buildings lit up in
Fellowship colours, a major event in
Cardiff and questions in the House
of Lords on PPS - as one of Ted’s
58
aims is to develop Parliamentary
connections. A Guide to Managing
PPS for the Medical Profession has
been produced and Ted is also in
talks with the Royal College of GPs
to develop awareness further. If you
would like to give your GP a copy,
please contact Central Office.
Accessibility
accessibility in hotels, restaurants,
retail, travel and many other areas.
Visit: www.purplehound.org.uk
A couple of our members
had the benefit of
a professional and
thorough massage.
Burnham Bungalow remains
popular and the solar panels that
were recently fitted will help with
electricity costs.
The Future
Purple Hound
•Ever closer work with the
European Polio Union, Rotary
International and other partners
a launch partner for the Purple
Hound, a new initiative about
accessibility and the phase one
website launch in March 2016 will
be followed by a printed Purple
Hound directory, set for publication
in early 2017 with a mobile app to
follow. It will contain articles and
list promotions on best practice on
A new Legacy Pack is available.
•Raise media profile and
awareness levels with the
public, medical profession and
Parliament
There will also be a PPS Day in
Belfast in October.
South of England
who are genuinely disabled have
seen their allowances increase.
Also the proposed changes to PIP
– in particular the points awarded
for aids and adaptions made in the
Chancellor’s recent budget have
now been abandoned. Watch this
space!
DLA/PIP Presentation
The presentation by Ahmad on
issues with DLA/PIP highlighted the
difference between our perceptions
of what is normal and how points
are awarded with PPS. For
instance, if you need to sit on your
bed to help you dress or put your
shoes on, that is counted as an aid
= potentially two points.
Can you make a cup of tea?
Sneaky question, as the way we
may make a cup of tea is not
usually the way someone may
'normally' make a cup of tea. Do
you need to prop your arm up to
pour the water? Can you carry a
cup without spilling it? Do you slide
things along the worktop (as I often
do) to help you carry things? There
are also questions that are asked
which are in fact the same, just a
different way of asking - to perhaps
find inconsistencies in what you say
– just be careful!
Please be aware that if your
circumstances change in any
way and you are on DLA, if you
decide to apply for an increase
in the allowance, then you will
be transferred to PIP even if you
are above the working age. The
changes have resulted in 44
per cent of people losing their
Motability cars, but many people
Every case is individual and
Ahmad’s advice is that you
get someone experienced in
completing such forms if you are
due to change from DLA to PIP
or have any other concerns when
completing the forms.
For more information on this huge
subject, please contact Central
Office or the Citizens Advice
Bureau.
(A separate note: Ahmad will be
taking part in a Fundraising ‘Vitality
British 10k London Run on Sunday
10 July in aid of The British Polio
Fellowship. Please sponsor him
by making a donation via Central
Office: 0800 043 1935)
Holistic Treatments
Our third presenter was Christine,
member of the South East Kent
Branch who gave a talk on the
benefits that holistic treatments
can offer to people who are
experiencing PPS. Stressing that
there is no cure but there are
ways of alleviating some of the
symptoms, from relaxation methods
and nutrition, to reflexology and
aromatherapy, a couple of our
members had the benefit of
a professional and thorough
massage.
A great ending to a very rewarding
and interesting day.
If you want to contact Christine
to arrange an appointment or join
our Branch for lunch, or to be
kept in the loop on my emailing
list, please email me at
flamingo@btinternet.com
In the meantime, if you are on
Facebook, come and join the
discussion. Our Branch has
approaching 700 members on our
Post Polio Syndrome page (ensure
you type the exact title into the
Facebook Search), and the South
East Kent Polio page for news of
Branch activities. We also have
our own web page:
http://sekpoliogroup.com/
I was in Bluewater and was
looking at an exhibition of
mobility aids. In addition, I met
two ladies who were exhibiting
some clothing named ‘The
Able Label’. Wrap round skirts
for ease of use, particularly for
wheelchair users, and various
other items of clothing with
Velcro fastenings rather than
buttons. They started up just
six months ago and said they
may be able to get someone
along to show some of the
clothing to a Group. If anyone
is interested, you can contact
them via their web site:
www.theablelabel.com or
Tel 01622 828994
A M Couling
59
South of England
South East Kent
Greetings to all members from the South East Kent Branch.
Winter seems to get longer every year, but by
the time the bulletin is published we should at
least have seen some sunny, warmer days. As an
active Branch, we are very lucky to have a growing
membership and we have lots of plans for trips,
outings and lunches in the coming year.
We are a friendly, happy and sociable Branch,
so why not come along and meet us?
email: flamingo@btinternet.com or phone
The British Polio Fellowship for our contact
telephone number.
You won’t be sorry.
We meet throughout Kent on the fourth Thursday
of every month as well as plenty of excursions to
places of interest.
Our lunches have already been booked throughout
the year and the next two are:
26 May at the Elham Valley Vineyard
23 June we shall be lunching at The Cider
Works in Waldershare.
Online bulletin
just another way to enjoy your favourite magazine!
We would like to to remind members of The British Polio Fellowship
that copies of the bulletin are always available to read online on the
charity’s website.
Go to www.britishpolio.org.uk,
click on ‘services and information’
and then ‘the bulletin’ in the
menu on the left and you will find
a list of issues from the last four
years.
So, if you would like to opt out of
receiving the paper copy and just
read online you can do so.
To opt out of receiving paper
copies, simply contact
Central Office or email
thebulletin@beyondpr.co.uk and
let us know. We will remove your
name from the mailing list.
60
holiday programme
Grant applications
How it works
The Ron Scudamore
Holiday Programme
The programme originated from
a legacy made by our former
Chairman Ron Scudamore.
Ron served as our Chairman
in the 70s.
At one time Ron used to run
the Western Region holidays
and he always believed that it
was important that members
could enjoy affordable and
accessible holidays. He wanted
his legacy to be used solely for
this purpose and so the Holiday
Programme was born.
Since the programme began
we have helped pledge over
£146,000 to help people enjoy a
much needed holiday or break.
prices
reduced
The maximum grant that you can apply for is £350 towards the cost of
your holiday or break. You can holiday in this country or abroad and it can
be used towards the hotel or flight. To request an application form or for
further information please contact Rosalind Evans on 0800 043 1935 or
email: rosalindevans@britishpolio.org.uk
Once we have received your application, it is considered at the next Grant
Review Panel which meet every two months. Please remember to send
your application in well in advance (see box below as to when to submit
your application for consideration). After the Grant Review Panel has met
you will be notified in writing.
Please note that your holiday departure date needs to be at least six
weeks after the relevant panel meeting. Grant pledges are not paid
retrospectively.
You can apply for a grant once every two years.
Applications received
Review Panel meets
1 May - 30 June 2016
July 2016
1 July - 31 August 2016
September 2016
1 September - 31 October 2016
November 2016
Dates for 2016 Price per week
23 April - 20 May
£526
21 May - 1 July
£574
2 July - 23 September
£600
24 September - 28 October
£474
29 October - 9 December
£337 reduced to £200
10 December - 30 December £447 reduced to £200
Burnham bungalow
Don’t forget that members
looking for an affordable holiday
in comfortable, well adapted
accommodation overlooking
the sea can enjoy a week at The
British Polio Fellowship’s holiday
bungalow in Burnham-on-Sea.
There are spectacular views of the
bay from the living room and two
of the bedrooms. The bungalow
offers well-adapted and modern
accommodation and has the
facilities to guarantee a good
holiday at any time of year. The
table shows the new weekly rates
for the holiday bungalow. All
bookings begin on a Saturday.
A deposit of £100 is required at
the time of booking to secure the
bungalow. To make a booking
please contact Rosalind Evans
on 01923 281 097 or email
rosalindevans@britishpolio.org.uk
61
history corner
Helen Gray
the half century hero
Hello and welcome to History Corner. My name is Georgina
Hay and I have taken on the task of continuing the work so
ably done by Barry North until his death last year.
For those who don’t know me, I
thought it would be worth telling
you a little bit about me and my
involvement with The British Polio
Fellowship. I have had Polio since
I was eight months old, so have
never known anything else and
have been suffering the effects
of PPS for upwards of ten years,
although I have struggled to have
this confirmed.
I first joined The British Polio
Fellowship as a young child and
became part of Paisley Branch.
All through school and even when
I was away at university getting a
degree in history I maintained my
links with the Branch. I took part
in the swimming galas and the
early days of the sports which later
transferred to Stoke Mandeville.
When I moved to Ayrshire in the
80s, I had to make a decision –
there was no Branch or Group in
Ayrshire, so did I stay with Paisley
or join the South West Scotland
Branch which met in Dumfries?
Paisley was marginally closer than
Dumfries, so I stayed put.
After a few years I became involved
with the Branch committee
becoming first Vice Chairman
62
and then Chairman. I also served
as a Branch representative on
our regional council, serving as
Regional Secretary for five years
and also three years as an Area
Trustee.
Helen wanted to give
something back to an
organisation which had done
so much for her sister.
I thought I’d use this first feature
to focus on my memories of
someone who was a real stalwart
of The British Polio Fellowship for
more than fifty years. Very many of
you will know the name of Helen
Gray, even if you didn’t know her
personally.
I first remember meeting Helen
when a few of our Paisley
swimmers went to the pool in
Clydebank to get times taken
for our first gala and being
introduced to Bobby McGregor, the
Commonwealth Games swimming
medallist. I was well impressed!
Shortly after that I was allowed
by my mum to go with Helen to
compete at the junior BSAD games
at Stoke Mandeville. The fact my
mum trusted Helen said something
was special about this woman as
my mum didn’t trust many people
to look after me.
Years later, I was Regional
Secretary to Helen’s Regional
Treasurer and as it happened we
had a Regional Council Meeting
which coincided with Helen’s
80th birthday. Ahead of the day,
the then Regional Chairman, Jim
McDonald, had visited Helen and
borrowed a programme from one
of Helen’s photo albums from
when her Branch had hosted the
annual rally back in the 60s. This
was then used to create a ‘picture
cake’ which was presented to
Helen along with flowers at the
council meeting. All done without
her knowledge. One of many ways
in which members in Scotland
showed their appreciation of all that
Helen did for the region long after
her sister, who had had Polio, had
passed away. Helen wanted to give
something back to an organisation
which had done so much for her
sister. You won’t find many like
Helen.
history corner
Come &
visit us!
Starline Coaches and Disabled Adventure Club 2016
Holiday to Nairn, Scotland
28 May - 3 June 2016
Bed, breakfast and evening meal
Disabled room with wheel in shower available. Small mobility
scooters welcome.
Don’t have a wheelchair? Please feel free to join us!
only
£575
per per son
Day trips
Day trips planned to Loch Ness, Culloden battlefield,
CairnGorm mountain railway, Inverness, boat trip to Moray Firth
to see the seals and dolphins.
(Admission charges may apply. May be subject to change)
Mobility coach with wheelchair lift so you can stay in your wheelchair
on the coach. Picks up at Melton, Thurmason and Mount Sorrel.
Telephone Starline Coaches on
0116 2030 3325
63
my way
When I had recovered from this, I
think that was the point I decided
so, I have a bad left leg but need
to get on with life. I went back
and finished school and then the
swinging 60s came along (Mods
and Rockers). I got a scooter and
became a Mod! Then in 1969 I
got married and had two lovely
children. Sadly after twenty years
the marriage ended, but during that
time I purchased houses to do them
up and can honestly say Polio never
stopped me doing anything.
My way
Julian Sims
‘Non, je ne regrette rien’
I was born in 1944 and got Polio
or infantile paralysis as it was
called then in 1951.
My recollection of that time is that
I had gone with my parents from
our home town of Colchester to
visit my sister and her husband
in Aldershot. They were in army
married quarters. Her husband was
in the army fire brigade and I can
remember going with him to see
the fire engines, as you would at
age seven.
attached to my left leg to try
and hold the foot up etc. but in
hindsight, I don’t think any of it did
much to help. I am not sure how
many months I spent in isolation at
Mile End but it seemed forever.
While there I kept falling over and
on the way back the falling got
so bad that I had to be carried.
An army doctor was called to see
me and he suspected what was
going on and told my parents to
get me back home as soon as
possible. Dad and mum took me
straight to our doctor, who had me
admitted to the isolation Hospital in
Colchester (Mile End Hospital).
Eventually I was moved to Black
Notley Hospital in Braintree. I
received lots of physio treatment
during my stay and became an
expert in a wheelchair, exploring
all the grounds of the hospital.
After nine months or so, I was
sent home with my leg in a knee
length calliper. I returned to school
and tried to mix with all the other
children but somehow felt very
frustrated not being able to join in
fully with all the games and always
being the last one back into the
classroom after playtime.
No one was allowed into my room
except nurses etc. who always had
gowns and masks on. My parents
and family had to look through
the window when they visited and
I remember being very confused
and not understanding why they
could not come in to see me.
Then my dad got me an old and
battered three wheeled bike, to try
and get some muscle back into
my leg and this did help. Then
when I was about 11, I went back
into hospital to have an operation
to fuse my left ankle joint and so
finally do away with the calliper.
I was confined to bed and
remember all sorts of contraptions
I took life and its ups and
downs head on which now,
with all the talk of PPS,
perhaps I should have
tempered life more!
I was lucky in that I always worked
all my life until 63 and by then it was
becoming very hard. Three years
ago I took a tumble and now have
titanium plates holding my bad leg
together and have to use crutches
all the time.
I took life and its ups and downs
head on which now, with all the
talk of PPS, perhaps I should have
tempered life more! But I have no
regrets. My children are now in their
40s plus I have two teenage grand
daughters. Family life is good and
they all chip in to help me and as
they say, you never have to look far
to see someone worse off than you.
I am still able to drive and get out
and about, visiting friends etc. so
take each day as it comes. My
mantra is “Yesterday is history,
tomorrow a mystery…”
Please send your My Way submissions and photographs to thebulletin@beyondpr.co.uk
As space is limited, regrettably we can usually only publish a maximum of 600 words and only one or two images.
64

Biggest ever National Indoor Games - Leicester 2016

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