thebulletin jul-aug 2013 - British Polio Fellowship

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British Polio
The official magazine of The British Polio Fellowship
July/August 2013
THE BRITISH POLIO FELLOWSHIP
Contacts
Chief Executive
Ted Hill, MBE
0208 836 3671
[email protected]
Receptionist/Office Administrator
Sarah Mchugh
0800 018 0586
[email protected]
Director of Operations & Services
National Officers
Heike Kluever-Littlewood
Chairman: Pam Jones
0208 836 3682
Vice Chairman: Linda Evers
[email protected]
Treasurer: Aidan Linton-Smith
Support Officer (Panels)
Natricia Duncan
Patrons
0208 836 3677
Lionel Blair Dr Moira Anderson OBE [email protected]
Michael Cassidy CBE
Joan Collins OBE
Support Services Team
0800 018 0586
Sir Bobby Charlton CBE
Bryan Forbes CBE
[email protected]
Joe Fisher
Hannah Gordon
Disability Benefits, Information & Advice
Andy Love MP
Gordon Lumb
Membership: Enquiries, Joining
Dr Geoffrey Spencer OBE
Branch & General Administration
Holiday Programme
Ambassadors
Grants & Information
James Crisp, Tony Klinger, Julia Roberts,
Rosalind Evans
Anne Wafula Strike and Gareth Williams
0208 836 3686
[email protected]
Publisher: The British Polio Fellowship
Marketing and Campaigns
Editor: Laura McCaffrey, c/o Central Office
Website/The Bulletin
Design and production: Laura McCaffrey
Glenys Balchin
Writer: Nicola Hill
0208 836 3684
Printing and distribution: Russell Press
[email protected]
The British Polio Fellowship is a registered charity
Advertising
in England and Wales (1108335) and in Scotland
Shirley Russell
(SC038863). A company limited by guarantee and
01953 451620
registered in England and Wales No 5294321.
[email protected]
The Fellowship reserves the right to edit articles and
letters submitted. The views expressed in The Bulletin are Fundraising
not necessarily those of The Fellowship. Publication of an Legacies and Events
advertisement does not imply that approval has been Marianne Gkikas
given to goods and services.
0208 836 3679
[email protected]
An invitation to join us. It costs just £25 to
Trusts
become a life member of The Fellowship. As
Diane Ware
0208 836 3678
a member you receive The Bulletin every two
[email protected]
months and can join your local Branch or
Administration, In Memoriam, Donations and
Group. If you would like to know more about
Merchandise
us before making up your mind please
Linda Davis
contact Central Office (details above).
0208 836 3689
The Bulletin is the bi-monthly magazine of The British Polio Fellowship, distributed
[email protected]
free to members (circ. 9,000). Cost for non-members is £2.50 (annual subscription
Finance
£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
Dawn Grafetsberger
discretion of the editor. The publishers, authors and printers cannot accept liability
0208 836 3675
for errors or omissions. Any transparencies, prints or artwork will be accepted at
owners risk. All rights reserved. No part of this publication may be reported in
[email protected]
any form without written permission of the copyright holder and publisher. The
Bulletin is printed on Magnomatt paper which meets and surpasses environmental
Online Forum
standards and is recyclable. Only pulp with a low environmental impact is used
Members & Guests
and all integrated pulp is TCF (Totally Chlorine Free). Market pulp is either ECF
(Elementary Chlorine Free) or TCF.
www.britishpolio.org.uk
contact details
The British Polio Fellowship, Eagle Point,
The Runway, South Ruislip, Middlesex HA4 6SE.
Freephone 0800 018 0586 supplied by MCI Worldcom
Fax: 020 8842 0555
Email: [email protected]
Website: www.britishpolio.org.uk
2
The British Polio Fellowship
Message from the
Chief Executive
By Ted Hill
Contents
3-10
British Polio Month
11-19
Fundraising news
20-27
Research news
28-29
Support Services 30-40
Our charity partners 40-43
Branch & regional news 44-47
Your letters
48-50
news from central office
News from Central Office B
ritish Polio
Month got off to
a fantastic start
at the Team Splash
Swimming Gala on
7 July. Not only did
we have a brilliant
afternoon of fun and
fundraising, not to
mention exciting
and sometimes silly
races! – but we made
quite an impact in the local area with our huge
Ad-van poster. Our thanks to the members at
the National Indoor Games in Leicester who
patiently waited to pose for photos for the ad –
I hope you will agree it looks fabulous, and made
quite a stir in Croydon, and then through the
streets of London, helping to raise awareness of
Polio and Post Polio Syndrome (PPS).
+
Holiday programme 51
History corner
52-53
Advertising 54-55
My way
56
3
+
We were lucky enough to be joined at the Gala
by three Paralympians – our Ambassadors
James Crisp and Anne Wafula Strike were joined
by John Watts, who swam in the Tel Aviv Games
in 1968.
But they were not the only celebrity stars at
the event. Another of our Ambassadors, QVC
presenter and author of One Hundred Lengths of
the Pool, Julia Roberts, swam – you’ve guessed
how far! – and we were also able to announce
that another author, Professor Gareth Williams,
has also agreed to become an Ambassador.
He has just published Paralysed with Fear – the
story of Polio, the first comprehensive history of
Polio for over 40 years. We were very pleased
that Fellowship archivist Barry North had been
able to assist Gareth in the writing of the book –
thanks Barry!
As part of British Polio Month, we are delighted
to enclose with this issue of The Bulletin a
Medical Alert card (see p18). The card is easy
to keep in your purse or wallet and provides
vital information about those living with Polio
and Post Polio Syndrome (PPS). Should you
unexpectedly find yourself in hospital or in an
emergency situation, the card will enable people
to immediately assess any special requirements
you may have. So carry it with you at all times,
and if you need another, contact Sarah Mchugh
here at Central Office on 0800 018 0586 or by
email at [email protected]
Buckingham Palace Garden Party
To top it all, film maker and author Tony Klinger
has also agreed to become a Fellowship
Ambassador, as well as offering to donate some
of the profit from his book, The Butterfly Boy, to
The Fellowship.
And of course, I must mention the competitors,
who all swam their hearts out and helped make
the event such a success. Well done to the
Fellowship staff and volunteers team, who won
the trophy!
Our very sincere thanks go to everyone who
took part – it helped to raise awareness and
money for The Fellowship to enable us to
continue doing our vital work in reaching out to
everyone living with Polio or PPS.
Medical Alert card
I had the real pleasure of attending one of
the Garden Parties at Buckingham Palace in
May, representing The Fellowship. It was a
magnificent day but quite surreal, as I could not
get to grips with walking in the grounds eating
ice cream and drinking tea while the band
was playing Bond theme tunes. Following the
Olympics I half expected Her Majesty to abseil
down the palace walls, but that was not to be.
Unfortunately, I was not one of the lucky ones
4
picked at random to meet the Royals, so was
unable to get our message across directly, but it
was a splendid day nevertheless.
As part of the ongoing development process
for trustees, the May meeting was set aside
for training. In the morning we focused on
governance issues and preparing for the 2014
trustee elections (see below), but the afternoon
was a little different.
Trustees plus senior staff attended the Space
Centre in Leicester to undertake an extraterrestrial experience working in outer space
to save the world. While clearly a bit of fun, the
event allowed trustees and staff to work in
situations that were not familiar to them and to
come together to resolve problems. You will be
glad to hear we did manage to save the world
and be home in time for tea.
As a charitable company, we are obliged by law
to have a set of rules governing how we are run
– these are called Memorandum & Articles of
Association. We are setting up a panel to review
our current documents, comprising the current
Chair and Treasurer, me as Chief Executive, and
two of our members.
The job of this Governance Review Group will
be to look at our rules and in particular the way
we elect trustees. The timetable for the panel
is set out below, and the framework for the
group’s work is on p6. Anyone who would be
willing to contribute in this way should write
to me detailing their interest and any relevant
qualifications by 31 August. If more nominations
are received than the two places available,
then the Board will select the most appropriate
people. Expenses for attending the meetings
will be paid.
Out of this world
How The Fellowship is run
Fellowship accounts
The accounts are to be presented at the AGM
in September. Any member requiring a set of
accounts prior to the AGM can request a copy
by contacting Sarah at Central Office on
0800 018 0586 or email: sarahmchugh@
britishpolio.org.uk n
Governance Review Group
timetable
July Bulletin
31 August
September
Sept – Dec
January 2014
January to July 2013
13 July 2014
September 2014
Terms of reference in Bulletin &
seek two members.
Responses from members
Announce at AGM
Meeting
Recommendations to Board
Face to face with membership
Finalise recommendations
AGM
Action
ALL
Chair
Group
Group
Board
Board
5
Governance Review Group
framework
1.
Background and purpose
1.1.
The British Polio Fellowship (BPF) is
committed to meeting the challenges
of the future. The organisation values its
membership and is committed to open
discussions.
1.2.
1.3.
c.
d.
The problem is that the current
Memorandum & Articles dated 2007 requires 4.
Trustees to stand for re-election en mass
4.1.
every third year to a maximum of three
terms. In 2014, four of the current eight
Trustees will no longer be eligible to stand so
that continuity and experience will be lost.
The Governance Review group has been
established to update the Memorandum &
Articles and in particular surrounding the
terms of Trustees appointments specifically
to address the appointments in September
2014 when a number of terms come to end.
2.
Change principles
2.2.
The following principles will underpin
the decision making of the Governance
Review group and reflect BPFs commitment
to safeguarding the wellbeing of its
membership:
2.2.1. Change is considered and planned, based on
consultation with relevant people.
2.2.4. Change is compliant with relevant policies
and procedures.
2.2.5. Change is monitored, evaluated and based
on best practice.
3.Responsibilities
3.1.
a.
b.
6
The responsibilities of the Governance
Review group is to:
Identify a resolution to the continuity
problem faced in September 2014 &
recommend to the Trustees.
Review the current arrangements
Membership of this group
The following persons have been appointed
as members of the change management
group:
•
Chair
•
Treasurer
•
Chief Executive
•
Two members from the wider BPF
membership.
4.2.
Members shall preside on the group
until September 2014 and are eligible for
reappointment following expiration of their
period of appointment if required.
5.
Others in attendance
5.1.
Various staff or external persons may be
required to attend the meetings at the
discretion of the group.
6.
Secretary to the group
6.1.
The Chief Executive will provide secretariat
services to the group.
7.
Meeting procedures
2.2.2. Change is transparent, consistent and fair.
2.2.3. Change is communicated to the relevant
people in an appropriate and timely manner.
around Trustee terms of office and make
recommendations to the Trustees.
Review current Trustee election/induction
processes & make recommendations to the
Trustees.
To make recommendations to the 2014
Annual General Meeting.
7.1.Frequency
The group shall meet every two months.
However, in some circumstances, meetings
may need to occur more regularly.
7.2 Notice of meeting
As far as practicable, notice of meetings and
supporting documents shall be available
seven working days in advance of the
meeting date.
7.2.Quorum
A quorum shall consist of three members.
L
I’ve been working and helping out at Central
et me tell you about an exciting
Office since mid-February this year. I’ve been
opportunity we had recently at Central
involved in various projects, particularly the
Office. One of our trustees, Bridget Flint,
May/June Bulletin and British Polio Month 2013.
was interviewed for a well-known television
programme for the BBC. We
From going through various
can’t tell you the name of
drafts of texts such as the
the programme just yet but
During my time here at GP letter and the newly
we can give you an insight
printed medical cards, to
The Fellowship we’ve attending meetings about
as to
what it was like ‘behind the
swimming gala on 7
appointed three new the
scenes’.
July, it has all been valuable
experience. Not only that, I’m
A humble duo came in
ambassadors, all of
glad I was able to help those
to our office on a Friday
afternoon (it was a rather
whom bring something that have spoken to me in
the last few months. Some
hot day) equipped with
different
to
the
charity.
callers just brought a smile
their camera and lighting.
to my face as they were so
Personally, I would have
Let
me
just
say
that
they
cheery.
thought they needed more
hands and equipment, but
During my time here at The
are three genuinely
they proved me wrong.
Fellowship we’ve appointed
The cameraman and the
lovely people who have three new ambassadors, all
lady interviewing Bridget
of whom bring something
both knew what they were
a real willingness to help different to the charity.
doing and they did it well!
Let me just say that they
They asked questions about The Fellowship and raise are three genuinely lovely
Post Polio Syndrome (PPS)
people who have a real
awareness as best as
and life as a child with
willingness to help The
Polio, among various other
they can. There are good Fellowship and raise
topics. They filmed in little
awareness as best as they
segments according to the
can. There are good things to
things to come!
questions asked, not filming
come!
for longer than maybe two
Now as I finish writing this
minutes at a time. Keep an eye out for more
article and my last day here at Central Office
details later on.
draws to a close, I’d like to say thank you to all
Most of you may not know me, but I may have
the staff that have been so wonderful to me. I’ve
spoken to some of you over the phone. My
been welcomed with open arms and bid adieu
name is Sujata, and as part of my university
with many happy memories.
course’s placement scheme (Brunel University),
Sujata Gurung, Brunel Intern
A fantastic experience and
great pleasure
7
British Polio Fellowship
Annual General Meeting
2013
FINAL ANNOUNCEMENT
T
he Annual General Meeting of The British Polio Fellowship will be held as follows:
Date: 21 September 2013
Venue: The Hilton Strathclyde Hotel, Phoenix Crescent, Strathclyde Business Park, Bellshill, North Lanarkshire ML4 3JQ. Tel. 01698 395500.
Programme:
10.00am – 10.45am
Registration
11.00am – 12.00pm
AGM including Q&As
12.00pm – 12.15pm
Announcement of Barbara Wood Citizenship Award
12.30pm – 1.30pm
Buffet lunch
1.45pm – 2.30pm
North Lanarkshire Council Welfare Rights, Social Inclusion Team
2.30pm – 3.15pm Professor Gareth Williams presenting extracts from his latest book
Paralysed with fear – the story of Polio. The book is reviewed on page 39.
3.15pm – 3.45pm
Coffee break
3.45pm – 4.15pm
Annual raffle
4.15pmFinish
If you are planning to attend, please complete the Reply Booking Form opposite.
For booking accommodation at the AGM venue please use the above contact details. Room rates
are £95 per room, per night, including dinner, bed and breakfast. When booking, please quote
‘British Polio Fellowship AGM Event’. n
We want to hear your news. Please tell us what events you have
organised, or trips you have been on.
Copy dates for The Bulletin are:
September /October issue – 10 August
November/December issue – 10 October
Please note The Bulletin is published in the middle of the month.
Send your reports to the address on page 2.
8
Please return this form as soon as possible to: Freepost RLSJ-BAGS-BUCT, Sarah Mchugh,
British Polio Fellowship, Eagle Point,The Runway, South Ruislip, Middlesex, HA4 6BR
Please tick the relevant boxes.
I wish to attend the Annual General Meeting, 21 September 2013, in Strathclyde, Scotland
I am a member of The British Polio Fellowship and my membership was valid on 31 July 2013
I am a member of the Company (Only Company members are entitled to vote at the AGM)
I am unable to attend the AGM. Please forward a copy of the Annual Accounts
I will be using my: Manual wheelchair Powered wheelchair
Scooter
NB: If you find you are unable to attend after you have returned the form, please contact Sarah
Mchugh on 0800 0180586 or [email protected] We have to pay for non-attendees if we do
not cancel their places in advance.
Annual General Meeting
2013
Reply Booking Form
Name ________________________________________________________________
Address ________________________________________________________________
__________________________________________________________________________________
Tel no________________________________________________________________
Name of guest(s) ________________________________________________________________
(needed for Health & Safety recording)
Do you have any special dietary requirements (e.g. gluten free, etc)?
Yes
Please specify ______________________________________________________________________
Yes
Does your guest have any special dietary requirements?
Please specify______________________________________________________________________
Accommodation – Please contact hotel directly.
In addition to the AGM venue, there are further hotels nearby. Early booking for cheaper
rates and availability is advised. The hotels shown are recommendations only. As individual
requirements vary, you are requested to check with your hotel of choice as to whether your needs
can be fully met. The Fellowship cannot accept any responsibility for your personal bookings.
Hotel
Premier Inn, New
Edinburgh Road
Holiday Inn
Express
Alona Hotel
Accommodation
Friday night
£29 pre-paid
£53 flexible
£59.95
Accommodation Telephone
Saturday night
£29 pre-paid
0871 527 8420
£55 flexible
£59.95
0871 423 4917
Distance to AGM
venue
1.3 miles
£75
£75
2.9 miles
01698 333 888
2.5 miles
9
T
he Fellowship is pleased to announce
that we now have a Parliamentary
Officer, Anderona Cole, who is working in
Central Office to help boost the profile of the
organisation among Parliamentarians.
Planning a meeting
MPs (and MEPs) are sensitive to the opinions
of their constituents – even if they disagree
with them. They will always give high priority to
requests from constituents and are concerned
about getting local publicity. So remember that
you are important to them!
2. Ask your MP to take some form of action in
the future, for example, to do press publicity or a
fundraising event with your group.
Who is your MP?
The first step to lobbying Parliament is to
find out as many basic details about your
MP as possible, i.e. his/her name, party and
constituency. To find this information out,
telephone the House of Commons information
service on 020 7219 3000, or contact your local
Town Hall. You can also find this information by
visiting www.writetothem.com by typing in
your postcode.
How to approach
them
First, decide if you
want to write to, or
have a meeting with,
your MP. You might
want to write to them
and invite them to
address one of your
meetings or to attend
an event you have
organised – MPs are usually keen to participate
if the local press is involved. Whether you are
sending an email, letter or a letter accompanied
by additional material, remember to keep it short.
If you do not hear back after two weeks, follow
up your request by telephone.
10
1. Introduce the organisation – give a brief
background of the organisation, the issues you
experience with Post Polio Syndrome (PPS) and
the event or issue you are there to talk about.
3. Ask for his/her thoughts and comments on
what you have said and asked.
4. Before your meeting it is well worth
rehearsing your arguments thoroughly.
5. Prepare yourself for arguments that you might
reasonably expect from the MP as to why s/he is
unable to take the action you request and make
sure that you give the MP good reasons for
taking up your concern.
At the meeting
•
•
Dress to impress.
Be punctual and polite.
Follow up
Write and thank the
MP for the meeting.
Follow up the
actions the MP
agreed to take.
Feedback
Have you had a
positive or negative
experience while
contacting your MP? Please feel free to contact
me so that I can help you in terms of moving
forward and negotiating the best possible
outcome. Tel: 0208 836 3676. Email: anderona@
britishpolio.org.uk
Anderona Cole, Brunel Intern
Photo redit: Amnesty International
How to lobby
your MP
British
Polio
Month
2013
This year’s British Polio Month is now in full swing - or should we say swim?
It started with our Team Splash Swimming Gala on 7 July, which was a great
success. Reports of this, our two new Ambassadors, celebrity supporters, ad-van
and Medical Alert Card for members are on the next pages, but to wet (sic) your
appetite, below we feature just some of the photos of the great day itself.
british polio month
11
british polio month
12
Team splash stars gather to make
welcome waves for Polio
T
he first event heralding the start of British
Polio Month got off to a flying start as
a host of stars and celebrities from the
world of TV, sport and the arts gathered at Trinity
School in Croydon on Sunday 7 July to raise as
much money as possible for The British Polio
Fellowship and have a great time in the process!
John Salako and Team GB Paralympian heroes
past and present. Veteran Paralympian Silver
Medallist swimmer from the 1968 Games in Tel
Aviv John Watts was present to meet and cheer
on the Paralympian Silver Medallist from the
2012 Games, James Crisp, as he took on Julia
herself for the grand finale.
QVC presenter and author Julia Roberts was
joined for 15 fantastic races by ex-Crystal Palace
and England footballers Geoff Thomas and
Also present were The British Polio Fellowship’s
latest Ambassadors, the author Gareth Williams
and film maker and author Tony Klinger.
The idea for the gala came about after the
publication of Julia’s book, One Hundred Lengths
of the Pool and Julia became an Ambassador for
The British Polio Fellowship. As Julia explains: “It
was just me privately swimming, but when I was
asked to be an Ambassador, I was asked if I would
mind delaying my swim until July to kick off British
Polio Month and make it more of an event.”
The result was the Team Splash Swimming Gala
with several fun events – including everything
from the ‘rubber ring race’ and ‘pyjama relay’
that had everyone in stitches to ‘Lilo races’.
And, of course, what race would be complete
without the obstacle course?! The British Polio
Fellowship team comprising staff and volunteers
were the overall winners, which was the icing on
the cake for a perfect day.
“The Team Splash event was a fantastic day and
we would like to thank Julia, all our celebrity
friends, our latest Ambassadors Tony and Gareth
and of course our Paralympian heroes past and
present who all gave of their time to make this day
of fun and fundraising such a huge success,” said
Ted Hill MBE, CEO of The British Polio Fellowship.
A day of three Paralympians, the event
witnessed the first-ever meeting of fellow
swimming Silver Medalists James Crisp and
John Watts and Paralympian and torch bearer
Anne Wafula Strike; all whom know what it is
like to face a life with Polio. “Polio and Post Polio
Syndrome (PPS) are still very much with us, but
Anne, James and John are proof that there can be
triumph and fun in the face of adversity and all the
money raised will go towards helping others with
Polio realise their potential,” said Ted.
british polio month
The whole event was enhanced on the day
thanks to ‘The Voice of Swimming’ himself Bob
Ballard, who kindly agreed to come along and
host the event.
It was also a day of three Ambassador authors,
as Julia Roberts met fellow authors Gareth
Williams and Tony Klinger who likewise share a
13
connection with the charity. Julia’s One Hundred
lengths of the Pool charts her life and personal
lifelong battle with Polio from the age of 14
months; while Gareth’s Paralysed with fear is the
first comprehensive history of Polio for over 40
years (see p39 for a review).
british polio month
Written by the celebrated film maker and
screenwriter turned novelist, The Butterfly Boy is
Tony Klinger’s first novel, whose central character
triumphs over Polio. It is also Tony’s personal
tribute to a childhood friend who sadly died as a
result of Polio.
“To have one hat trick of celebrity supporters is one
thing, but to have two trios of such accomplished
people lending their support was an experience
to savour,” added Ted. “It’s not often you get three
authors and three athletes of past and present to
come together for the same cause and they have
all helped us get British Polio Month off to a great
start. A massive thank you to Julia Roberts, QVC,
Trinity School, Five Live’s Bob Ballard and all the
other celebrities and volunteers who made Team
Splash a reality.They all offered their time to
The British Polio Fellowship and marked the start
of an important month for the charity in fine style.”
The Team Splash gala jointly benefits The
British Polio Fellowship and Leukaemia &
Lymphoma Research, two charities that resonate
personally with Julia Roberts, who has first-hand
experience of both conditions. Julia swam 100
lengths, while the celebrity swimming gala ran
on the other side of the pool, featuring friends,
family and colleagues of Julia’s from the world
of TV, sport, and entertainment. John Watts
was unable to swim but was there to cheer the
others on.
“It’s just a shame I can no longer swim myself, but it
was fantastic to meet and congratulate James and
Anne in person on their achievements,” said John.
“I remember my own Games in Tel Aviv vividly and
I’m sure James and Anne will feel the same about
London 2012 in years to come.”
The day’s activities were concluded with the
handing out of raffle prizes and Anne Wafula
Strike kindly handed out medals to the winning
team from The British Polio Fellowship.
London 10K triumph as
runners cross the line in style
A
big Bulletin thank you goes out to all members, friends and volunteers
who took part in the Great British 10k London Run on Sunday 14 July.
The British Polio Fellowship was represented by Rosalind Evans, plus
Mark Fisher and his wife, son of member and patron Joe Fisher and many
more. Thanks also go out to Emma Moorhouse and Jon Gardner from our
agency, BeyondPR, who also completed the course in the sweltering heat. By taking in many of the
sights of London, the Great British 10k has that ‘London Marathon’ feel, while funds raised by all our
runners will make a tangible difference to The British Polio Fellowship’s life-changing work for the
120,000 people still living with Post Polio Syndrome (PPS) and its effects in the UK today.
Anyone who would like to participate in future runs for The British Polio Fellowship or knows
someone who would be keen to do so, should contact Central Office free on 0800 018 0506, by
email at [email protected] or visit www.britishpolio.org.uk
14
Ad-Van ad in the can thanks to
Leicester Games participants
T
hose members who waited patiently
and had their photo taken at the Indoor
Games in Leicester earlier this year will be
pleased to know that their time was not given
in vain. The photos taken were used to dramatic
effect at the Team Splash event on 7 July in
the form of a giant 48-sheet Ad-Van poster to
promote the launch of British Polio Month in
July and August.
“The Ad-Van made a great
impact on everyone who saw
it at the Team Splash event,”
said Ted Hill, MBE, CEO of
The British Polio Fellowship.
“Using images of our members
rather than actors lends real
authenticity to the message
and driving this through
the streets of London has
This will not be the end of the poster (or indeed
our members’) contribution to this year’s
activities. Several other high profile events
are already being finalised and these will be
announced to members and the media in due
course. Once arranged, the Ad-Van and the
poster will be making another big impact for The
British Polio Fellowship and British Polio Month.
If you are able to volunteer as a collector for
future events, please contact Marianne at
Central Office 0800 018 0586.
Fellowship Ambassador Anne Wafula Strike and the Ad-van.
british polio month
The poster included the photographs of scores
of people who took part in the Games. Once
it had been used as the backdrop to the Team
Splash event, the van then went on a drive-by
through Croydon and London,
promoting the start of the
month-long series of events
designed to raise awareness
of Polio and Post Polio
Syndrome (PPS) in the UK.
undoubtedly given massive impetus to the start of
this year’s campaign.”
Joyce Mallaburn, Chairman of Sunderland Branch, has managed to
persuade 20 libraries in her local area to put up Post Polio Syndrome
Awareness Posters for British Polio Month. If you would like to have some
more GP letters, posters or literature to raise awareness in your local
community, please telephone Central Office on 0800 018 0586.
15
british polio month
Profits from The Butterfly Boy wing
their way to The Fellowship
T
he British Polio Fellowship is delighted to
announce that renowned film maker, Tony
Klinger, is to be an Ambassador for the
charity and is donating some of the proceeds of
his first novel – The Butterfly Boy – to The British
Polio Fellowship. Tony joins QVC presenter Julia
Roberts and Team GB paralympians Anne Wafula
Strike and James Crisp in taking up the mantle
of Ambassador to raise awareness of Polio and
Post Polio Syndrome (PPS).
Ted Hill, CEO of The British Polio Fellowship,
said: “These are exciting times for The British Polio
Fellowship. As we approach our 75th anniversary
next year, our members who have been living
with Polio for so long – and more recently coping
with the onset of Post Polio Syndrome – are finally
attracting the public awareness they deserve.
16
“Far from being a thing of the past, some 120,000
people in the UK are living with Polio and PPS every
day. I am absolutely thrilled that Tony has decided
to donate some of the proceeds from his book to
our charity, and would like to thank him for taking
on the role of Ambassador.”
“I am honoured and enthused to take on the role
of Ambassador for The British Polio Fellowship,”
said Tony Klinger. “A debilitating condition like PPS
affecting similar numbers of people to Parkinson’s
Disease is certainly a cause that should be better
understood and supported. As Polio had such an
impact on the life of The Butterfly Boy, it is fitting
that I should choose The British Polio Fellowship
as the book’s beneficiary charity. I am looking
forward immensely to working with the charity to
help them spread their important message.”
Celebrated author announced as
British Polio Fellowship Ambassador
H
ot on the heels of the news that
author and film maker Tony
Klinger has agreed to become an
Ambassador for The British Polio Fellowship,
an exclusive launch event to celebrate
the publication of Paralysed with fear – the
story of Polio, at St Stephen’s Church, Bristol
on 26 June was the stage for the official
announcement that its author, Gareth
Williams has also agreed to become the
latest Ambassador for the charity.
british polio month
Professor of Medicine at the University of
Bristol, Gareth’s previous work on smallpox
made him the perfect person to produce
Ted Hill (left) and Gareth Williams at the launch.
the first comprehensive history of Polio for
Williams uses the Polio story to address broader
over 40 years, while also kindly agreeing to
themes. One of these is the lure of alternative
put his knowledge and skills at the disposal of
medicine when faced with a disease with no
The British Polio Fellowship.
apparent cause or cure and also the legacy
“I am honoured, humbled and delighted to accept of Polio and how it has contributed towards
the invitation from The British Polio Fellowship
disability rights and support. In a recent review,
to become an ambassador for the charity,”
The Lancet stated that Williams has successfully
said Professor Williams. “It’s a very flattering
made the Poliovirus “a villain in a gripping multi-act
appointment and I am delighted the book has
play…his book should be read by anyone interested
met with such a favourable response. The British
in an incredible story well told by a great storyteller”.
Polio Fellowship’s archivist Barry North was a great
“It was a pleasure to meet Gareth at the launch
help in my research for the book, and I’m looking
and to officially welcome him as one of our
forward to working closely with the charity during
growing family of valued Ambassadors,” said Ted
British Polio Month in July-August.”
Hill MBE, CEO of The British Polio Fellowship. “I
Paralysed with fear is not just the history of
am happy we were able to play a part in helping
Polio, but the story of the vaccine and a moving Gareth put this significant piece of work together,
account of the lives of those who suffered the
and wish him every success with what is a
disease, masterly re-told and brought to life by
fascinating and moving account of Polio. We look
Gareth, with significant help from the charity’s
forward to working with him both during British
archivist, Barry North, who enabled Gareth to
Polio Month and in the future.”
utilise the charity’s resources to research the
See p39 for a review of Paralysed with fear.
history of Polio in detail.
17
Launch of Medical Alert card for
members
W
hile being an event of fun and
fundraising, the Team Splash
Swimming Gala on 7 July also had a
serious side, as it saw the launch of The British
Polio Fellowship’s new Medical Alert Card for
members. The card provides vital information
for healthcare professionals. Should you find
yourself in hospital or in an emergency situation,
it will enable people to
immediately assess any
special requirements you
may have
british polio month
“Be sure to carry your Medical
Card with you in your purse
or wallet at all times,” said
Ted Hill, MBE, CEO of The
British Polio Fellowship. “It
will ensure people know that
you are living with the late
effects of Polio or PPS and
will help ensure you receive
the correct treatment.”
Paralympians James Crisp (left), John Watts and Anne Wafula Strike
launch the Medical Alert card.
18
Over 120,000 people are
still living with the late
effects of Polio and Post
Polio Syndrome (PPS) in
the UK. Polio and PPS
remain big issues in the
UK and as the recent Team
Splash event at the start
of British Polio Month
demonstrated, it is far from
being yesterday’s problem.
Polio and PPS are still very
much with us and this new
Medical Alert card is one
more way The Fellowship
aims to help and support
its members.
The
The British
British Polio
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ispleased
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(PPS)
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MEDICAL ALERT
I have had Polio and I now experience the
LATE EFFECTS OF POLIO or POST POLIO SYNDROME (PPS)
I may require assistance or specialised treatment
Please discuss any treatment with me,
my family or carers or, where possible,
my regular practitioner(s)
British Polio Fellowship, Unit A, Eagle Point, The Runway, South Ruislip, Middx HA4 6SE
Tel: 0800 018 0586; [email protected]
Registered Charity No. 1108335
• 760 micron cards
This
informationspecific
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This Medical
Medical Alert
Alert card provides vital
vital information
to thoseprofessionals
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andthem
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For additional or replacement cards,
please contact Sarah Mchugh on
0800 018 0586
write to The British Polio Fellowship,
Unit A, Eagle Point, The Runway,
South Ruislip, Middlesex, HA4 6SE
or email [email protected]
www.britishpolio.org.uk
We’re here to help
Silent auction
Your chance to bid for a shirt
worn and signed by Chelsea
midfielder
Mikel John Obi
Y
fundraising news
ou haven’t missed your chance of
owning a prestigious football shirt,
as we are, once again, giving you the
opportunity to bid for a Chelsea shirt, this
time one that has been worn and signed
by Mikel John Obi. Member Joe Fisher was
given this shirt by his son Daniel who
is the Creative Director and Partner
at Chi and Partners, London. To add
provenance to the shirt, Daniel has
very kindly added the following:
“This shirt was worn and signed by
Mikel John Obi for the Samsung/
Chelsea ‘Pinball’ commercial
shoot at Shepperton Studios on
22/11/2012, over which I presided.”
Daniel Fisher
Details of the auction will be placed on our
website, Twitter and Facebook. If you would
like to bid for this shirt, please fill in the form
opposite and send it to The British Polio
Fellowship, Eagle Point, The Runway, South
Ruislip, Middlesex HA4 6SE. This form can
also be downloaded from our website (www.
britishpolio.org.uk) or you can write out all
your details on a separate sheet of paper.
Closing date for all bids is Monday, 19 August
2013. Any bids received after this date will not
be
included. If we
receive two bids of equal value,
preference will be given to the bid that
arrives first.
Remember that if you wish the item to
be mailed to you (which will be by registered
post), the cost of mailing will be added to the
sum you are to pay.
If you are successful with your bid, we will
contact you by telephone or email within 72
hours and the item will be sent upon receipt
of cleared payment. Payment can be made by
cheque or credit card.
Finally – to be sure of being successful a
generous bid is recommended!
was the
o
h
w
s
e
ri
ff
e
J
l
e
a
h
Mic
Congratulations to
shirt
s
e
rr
o
T
o
d
n
a
rn
e
F
for the
successful bidder
20
Silent auction form
Auction bid _______________ (not less than £30)
Name: ___________________________________________________________
$
Address: ________________________________________________________
__________________________________________________________________
fundraising news
Chelsea football shirt worn and signed
by Mikel John Obi
__________________________________________________________________
Mobile telephone no: ____________________________________________
Telephone no: ___________________________________________________
Email address: __________________________________________________
21
Grand
Summer Raffle
Amazing prizes to be won
First Prize: Kindle HD Fire with case PLUS £250 cash
Second Prize:
Luxury Food Hamper with two bottles of Champagne
Third Prize: Arsenal v Newcastle United Season 2013/2014 VIP hospitality for two people in the Premier League’s Box
Fourth Prize: One week’s self-catering holiday for two at the luxurious Irton House Farm in the Lake District
Fifth Prize: £155 M & S gift vouchers and £50 Next gift voucher
Sixth Prize:
£100 Love to Shop vouchers, £15 Sainsbury’s voucher and £10 Tesco voucher
PLUS OTHER MAGNIFICENT PRIZES
fundraising news
Inside your Bulletin you will find a book of 20 raffle tickets (unless you have requested not to receive
them). It would be brilliant if you were able to sell them all, and it would be even more brilliant if
you or any members of your family or friends could manage to sell a few more books!!! If you would
like to receive more books, please contact Marianne on 0208 836 3679.
22
Dance
Championships
This year the International Dance
Championships are being held on 1-3 October,
a week earlier than usual. The Fellowship will
once again be selling the programmes at
Brentwood Leisure Centre over the days of 1st
and 2nd and at the finals on Thursday 3rd at
the Royal Albert Hall.
Albert Hall commence at 4.30pm and carry on
until 9.30pm. The event actually finishes after
midnight so you will have plenty of time to be
able to watch the finals of all the dancing.
Your help to sell the programmes over these
three days would be terrific, so if you are able
to spare a couple of hours or so at Brentwood
on Tuesday (1st) or Wednesday (2nd ) between
the hours of 7.30am to 7.00pm, it would be
greatly appreciated. Programme sales at the
We also need volunteer collectors for several
other events – watch this space!
Whether you are a dancer or a Strictly fan,
you will be in your element watching this
absolutely spectacular event.
If you would like to help out on any of the days,
or at future events, please contact Marianne on
0208 836 3679 to arrange a date and time.
Sponsored
events
London 10k
If you would like to support this event, go to the
British Polio Fellowship Justgiving website to make
a donation.
Fellowship employee Ros Evans ran the
London 10K on 14 July. You can still show your
support for Ros, or for any of our other London Mount Kilimanjaro
10K runners – go to The British Polio Fellowship
Don’t forget
Justgiving website to make a donation.
that you can still
Whitehaven to Newcastle cycle ride
support our Chief
Executive’s wife
Jessica Reynolds, who is an employee of MES
Maggie Hill in her
Energy Services, is organising a 174-mile
challenge to climb
bike ride from Whitehaven to Newcastle this
Kilimanjaro, also
September and has recruited Alex, Chris,
by going to the
Mark, Tom and Matt (also MES employees) to
Justgiving website.
take part. Each of the guys is cycling for their
chosen charities and Chris has chosen The
British Polio Fellowship as his wife has Polio.
This is by far their biggest collective challenge
and although they are looking forward to
making a difference to the lives of many
people, they say that they will also be looking
forward to a well-earned pint at the end of it.
Finally run out of
Now that the Steam Owners and Drivers Club
of Redbourn have disbanded, Club Chairman
Doug Williamson has wound up all its affairs
and presented The Fellowship with a final
donation cheque of £3,950.67. Our grateful
thanks to all the members and supporters of
the Club for their dedication to The Fellowship
over so many years.
steam
On an even sadder note, Norman Elding,
who for many years, along with his wife
June, did a tremendous job in fundraising for
The Fellowship through the Steam Rally, has
sadly passed away. Our sincere condolences
to June and family.
fundraising news
Hope the training is going well and good luck
with the event.
However, if you
do not have a
computer, you
can support all or
any of the above
events by sending a
cheque to Central Office or by making a donation
over the telephone by debit/credit card (0800
0180586).
Have you got a birthday or anniversary coming up? Why not ask your friends
and family to make a donation to us rather than buying you a gift? Contact
Linda on 0208 836 3689 or email: [email protected] for more details.
23
Rotary raises
over £1,000
The Rotary Club of Cromer and Sheringham
raised £1,100 for The Fellowship through the
Club holding a Christmas Sleigh Collection
around the streets of Cromer and outside
Morrisons. Rotary President Peter Stibbons,
presented Shirley Russell with the cheque at the
Club’s meeting in May (pictured right).
fundraising news
In its press release, the Club stated: “For many
years, Rotary has made Polio eradication worldwide its top priority – concentrating particularly
on India, Pakistan and Nigeria. This year Cromer
and Sheringham Rotary Club decided to support
the work for Polio sufferers in our country – a
problem many people think no longer exists.”
135x180mm_HalfPage_SDMotionAd_AW.pdf
1 by
30/03/2012
Hopefully,
this view will be taken up
other 15:29 thanks to all Rotary Club members of Cromer
Rotary Clubs throughout the country. Many
and Sheringham for their support.
C
M
Y
CM
MY
CY
CMY
K
24
In memory
We would like to offer our sincere condolences to the families and friends of the following people:
Mrs Annie Bull member Buckinghamshire
Mrs Irene Commander member Derbyshire
Mrs Edna Fryman
non-member
Lincolnshire (mother of member)
Mrs Patricia Greaves member Mansfield
Mrs Doris “Dot” Hickman member
Worcestershire
Mr Bill Hinds non-member Bury (father of member)
Mr Clifford J Manning non-member Leicester
Mr John Smith Cook non-member Preston (father of member)
Mr Michael J Trueman member Wirral
Mr Tom Welch non-member Berkshire
Mrs Rose Wright member
Ruislip Branch
If you would like to make a donation in memory of a loved one, please contact Linda on 0208 836
3689 or email [email protected]
Our thanks go to the following trusts who have
kindly given grants to support the work of The
British Polio Fellowship in recent weeks:
Oak Trust
Pilkington Charitable Trust
Barclays Wealth & Investment Management
Mrs Eva Pumfrett Highnett Charitable Trust
(HSBC Trust Co)
Dennis Alan Yardy Charitable Trust
Sykes Trust
John and Mildred Law Fund
Tay Charitable Trust
Kass Charitable Trust
Woolf Charitable Trust
fundraising news
Trusts supporting Fellowship work
Miss W E Lawrence 1973 Charitable Settlement
Write to us at:
The British Polio Fellowship, Eagle Point, The Runway, South Ruislip, Middlesex
HA4 6SE.
25
Fellowship Christmas
Following another successful year’s sale of
Christmas cards, we will again be offering you
the service this year.
We have chosen four cards and hope that you
will find a design that appeals to you. Once
more we have negotiated a very good price for
the cards and even with an increase in postal
charges*, for a pack of 10 good sized cards we
will be charging £4.05, including p&p.
to Central Office together with your payment.
Alternatively, call us on our Freephone line 0800
018 0586 where we will be happy to take your
order using either your debit or credit card.
We will begin dispatching the cards in early
September.
This year you also have the option to order
your cards on our website – just visit www.
britishpolio.org.uk
*Please note to enable to keep the postage to a
minimum you may receive your cards in more
than one envelope.
fundraising news
Inside this issue of The Bulletin you will find a
Christmas card flyer that has an order form on
the reverse. Simply fill in the order and return it
cards
26
Scottish
country dance
Fellowship Member Margaret Manfield is
secretary of the St Michael’s Scottish Country
Dance Club in Somerset. Last year it held
its annual Summer Charity Dance at the
Davis Hall, West Camel, Somerset in aid of
The Fellowship and raised a fantastic £500.
Dancers came from other Scottish country
dance clubs in the South West and everyone
had a most enjoyable and sociable evening.
Since then, the Club has also
raised £40 by holding
a raffle.
Our thanks to the St
Michael’s Scottish Country
Dance Club for its support –
it’s greatly appreciated.
Money
Following the very kind donation of a
pair of tickets from the Derby County
Football Community Trust to the last
game of the Championship season,
Derby vs Millwall, a raffle was held
in the Rotatives Supply Chain Unit
at Rolls-Royce, Derby, raising £146
for The British Polio Fellowship. Chris Tague, Manufacturing
Engineering Programme Manager (right) is pictured presenting
the tickets to the winner, Roy Smith, DCDD HP Inspector,
Rotatives (left).
Chris Tague, who organised the tickets and the raffle, is
brother-in-law to James Crisp, Paralympian swimmer and an
Ambassador of The Fellowship.
Many thanks to Chris and everyone involved for the very kind
donation and for their support.
Don’t forget – you can
always make a donation to
The Fellowship from your
mobile phone, just follow
these simple steps:
Text: BRPF39 £(amount you
wish to donate), maximum
amount of £10.
fundraising news
‘rolls in’
Giving by
text is just
so easy
To: 70070
It’s as simple as that! The
amount you have donated
will then be charged to your
mobile phone account.
27
The Expert Panel
research
The Expert Panel comprises mainly doctors, consultants, therapists and
other medical professionals who work with or have an interest in Polio and
related conditions and British Polio Fellowship members who have first-hand
experience of Polio and Post Polio Syndrome (PPS). They work together with
our stakeholders to identify the issues that really matter to our members. In
the last issue of The Bulletin we introduced eight members of the Panel – here
we meet the rest.
Pam Jones, British Polio Fellowship
Chair
Dr Robin Luff, Retired Consultant in
Rehabilitation Medicine
As the National Chairman I sit on
both the Orthotics and Expert
Panels and act as a liaison to the
board of trustees. The Panels are
one of my key priorities and I am committed
to supporting their very important work
developing guidelines for the management
of Post Polio Syndrome.
I am a Consultant in
Rehabilitation Medicine
and have now retired from
clinical practice. I initially
trained in orthopaedic
surgery and this led to a
clinical involvement with
the Lane Fox Unit at St Thomas’ Hospital with
Professor Fred Heatley and more recently
with Drs. Craig Davidson and Nick Hart. I
chair the Fellowship’s Expert Panel, spending
my remaining free time with my classic
motorcycles and steam roller.
Dr C Eliezar
Okirie, Consultant
Rehabilitation
Physician
I have been a Consultant
Rehabilitation Physician
at the University Hospital,
Coventry and Warwickshire
NHS Trust (UHCW), since 2006. I divide my
working week between UHCW and the Central
England Rehabilitation Centre in Leamington
Spa, leading multi-disciplinary groups of
professionals. Prior to this, I worked as a
consultant at the Royal National Hospital for
Rheumatic Diseases, Bath, where I was medical
lead for Bath Head Injury and Bath Pain
Management Units.
I am a Fellow of the Royal College of
Physicians of London and executive member
of the British Society of Rehabilitation
Medicine. I am also current Chair in
Rehabilitation.
28
Corne Rossouw,
Occupational Therapist
I am Head
Occupational
Therapist at Guys
and St Thomas’ NHS
Foundation Trust and
have been involved
in running the Post
Polio Syndrome
Programme and
treating individuals
with a history of Polio since 2008. I have
16 years of experience as an OT, mainly
working in acute and rehabilitation settings
and am currently specialising in respiratory
rehabilitation.
Dr Steve Sturman, Consultant
Neurologist
I was eight when I caught
Polio while travelling to
Australia. After four years
in Australian hospitals and
homes I returned to the UK.
In my mid-teens I had spinal
surgery in Manchester.
I am a Consultant
Neurologist at
University Hospital
Birmingham with
special responsibility for
Neuro-Rehabilitation.
I have worked in the
field for over 20 years
and during this time I have developed a
particular interest in the late effects of Polio.
My clinical work focuses on the management
and investigation of the late sequelae of
Polio - including Post-Polio Syndrome. My
research and development interests include
motor recovery after stroke and provision of
equipment and services using appropriate
technology for re-ablement.
Later, after teaching in
schools, I became an educational psychologist
in Scotland and England. I also served The
British Polio Fellowship as a trustee for eight
plus years, with responsibilities in Wales.
I now suffer from PPS and I am keen to
help us all access the resources we need to
live good lives as we get older. I have three
children and a granddaughter and live on the
beautiful North Wales coast.
Dr Sue Woodward, Royal College of
Nursing, Lecturer
only two neuroscience nursing texts published
in the UK.
I have worked within the field of
neurosciences nursing almost
exclusively since I qualified as
a registered nurse in 1988 and
became a full-time lecturer at King’s College
London in 1999, completing my PhD in 2011.
I have also co-edited the Oxford Handbook of
Neuroscience Nursing (2009) and Neuroscience
Nursing - Evidence-based Practice (2011), the
I have particular expertise and research
interests in bladder and bowel care within
long-term neurological conditions. I chair the
Royal College of Nursing Neurosciences Forum
committee. I am founding editor and Editorin-Chief of the British Journal of Neuroscience
Nursing. I was also a member of the NICE
Guideline Development Group for urinary
incontinence in neurological disorders.
research
Dr Ros Sinclair, Researcher, Member
Representative
If you want to feed in to the work of the
Expert Panel, please contact us at
Central Office on 0800 080 586 or by
email: [email protected]
29
Support Services
The Support Services team provides information, advice and
support to people living with Polio and Post Polio Syndrome
(PPS), co-ordinates the welfare grants schemes for members
and supports the welfare volunteer network.
Contact us on: 0800 018 0586 FREEPHONE
support services
Personal Independence Payment
(PIP) update
In April, new claims for PIP began in parts of
northern England. From 10 June 2013 they
started to be rolled out to the rest of Britain
(except Northern Ireland). Disability Living
Allowance (DLA) is no longer available to adult
first-time claimants aged 16-64.
Anyone wishing to make a new claim for
PIP should call the New Claims Line on
0800 917 2222.
If you are already getting DLA and were aged 65
and over on 8 April 2013, you will not be asked
to claim PIP. You will continue to receive DLA as
long as you are eligible for it.
If you are already getting DLA and were aged
(Source: DWP)
Vehicle Excise Duty
and PIP
Travelling
overseas
As from April, those who receive the
enhanced rate of the mobility component of
PIP will be exempt from Vehicle Excise Duty
(VED). This is in line with the VED exemption
awarded to those in receipt of the higher
rate mobility component of Disability Living
Allowance (DLA).
If you are travelling to a country where there is
a risk of Polio, you will need a Polio vaccination.
This is because there are three strains of the
Polio virus and if you have been infected with
one type you could still get another.
Those who receive the standard rate of the
mobility component of PIP will be entitled to
a 50% discount on VED.
You will also need to consider other types of
vaccine or medications recommended for the
country you are visiting. Your GP or practice
nurse should be able to advise you.
(Source: HM Treasury)
30
between 16 and 64 on 8 April 2013 you will
need to be reassessed for PIP. This will start from
October 2015 and the Department for Work and
Pensions (DWP) will write to relevant claimants
before this date.
Polio remains endemic in three countries –
Afghanistan, Nigeria and Pakistan.
PIP and
Blue Badge eligibility
Following on from the article Blue Badge
consultation launched by the Department of
Transport in the September 2012 edition of The
Bulletin, The English and Scottish governments
have carefully considered the consultation
responses. With the introduction of PIP in April,
both have now published their regulations on
how Blue Badge eligibility requirements will be
linked to PlP.
Scotland
England
Wales
Ministers have decided that to automatically
qualify for a Blue Badge, people will have to score
eight points or more in the “moving around”
mobility activity for PIP. This activity assesses
a person’s physical ability to get around and a
score of 8 points or more will be awarded to
people who are either unable to walk or who
cannot walk further than approximately 50
metres. This means that future eligibility for a
Blue Badge will be very similar to how it has been
in relation to Disability Living Allowance (DLA).
In Wales, criteria for automatic qualification for a
Blue Badge are the same as for Scotland.
To automatically qualify for a Blue Badge in
Scotland, you will need to be awarded either 12
points (enhanced rate) for the mobility activity
“planning and following a journey”, which includes
those who cannot follow the route of a familiar
journey without another person, assistance dog or
orientation aid, or be awarded 8 points (standard
rate) or more for the activity “moving around”.
In N Ireland, legislation is yet to be announced.
Existing DLA claimants who because of
their age will not be reassessed for PIP, can
still automatically qualify for a Blue Badge if
they are in receipt of the higher rate of the
mobility component.
(Sources: Gov.UK, Transport Scotland, Wales.gov.uk)
Further PIP mobility consultation
On 24 June 2013 the Department for Work
and Pensions (DWP) launched a further
consultation on the mobility component of
Personal Independence Payment (PIP). This
follows significant feedback from disabled
individuals and organisations: that they want
a further opportunity to comment on the
finalised assessment criteria rules around the
mobility component.
Disabled people, MPs and peers have argued
that reducing the benchmark distance from 50
metres to 20 metres for someone to qualify for
the enhanced rate of the mobility component
of PIP (changed by the Government without
any prior consultation) could seriously
support services
Northern Ireland
compromise disabled people’s independence
and quality of life.
The DWP will be carrying out an independent
review in 2014 and will consider its findings
before reassessing the majority of existing DLA
claimants. Claims for PIP will continue to be
processed under the current benefit rules until
the outcomes of the consultation are decided.
The deadline for responses to the consultation
is 5 August 2013. You can access the
consultation at: www.gov.uk/government/
consultations/consultation-on-the-pipassessment-moving-around-activity
(Sources: DWP, Gov.UK, The Guardian)
31
support services
Who do I
ask?
H
ere is a selection of useful organisations
providing information, help and advice.
You may view or download the full Useful
Organisations list from our website or order
sections from the form on page 40.
Website: www.disabilityrightsuk.org
Advicenow
Formed through a unification of Disability
Alliance, Radar and National Centre for
Independent Living, Disability Rights UK aims to
be the largest pan-disability organisation led by
disabled people.
Website: www.advicenow.org.uk
HM Revenue & Customs (HMRC)
Advicenow is an independent, not-for-profit
website providing accurate, up-to-date
information on rights and legal issues for
England and Wales. Search the site by topic, or
download one of the Adviceguides.
Tax Credit Helpline: 0345 300 3900 (8.00am to
8.00pm, Monday to Friday, 8.00am to 4.00pm
Saturday, except Christmas Day, Boxing Day and
New Year’s Day).
Disability Law Service
HMRC pays and administers Child Benefit, Child
Trust Fund and Tax Credits.
Welfare Rights, Benefits and Legal
National Adviceline: 020 7791 9800 (Mon-Fri
10.00am -5.00pm)
32
Disability Rights UK
Website: www.hmrc.gov.uk
Pension Credit Helpline
Website: www.dls.org.uk
Tel: 0800 99 1234 (8.00am-8.00pm Mon-Fri)
DLS is a national charity providing free,
confidential legal advice for disabled adults,
their families and carers. The DLS also operates a
casework service and provides an employment
law legal help drop-in service.
The Pension Service
Tel: 0845 60 60 265 (8.00am-8.00pm Mon-Fri)
Welsh speakers living in Wales:
Tel: 0845 60 60 275 (8.00am-8.00pm Mon-Fri)
Publications request line:
DIAL UK
Tel: 0845 731 3233 (8.00am-8.00pm Mon-Fri,
9.00am-5.00pm Sat and Sun, answerphone out
of hours).
Tel: 01302 310 123
Website: www.direct.gov.uk/en/
Pensionsandretirementplanning/index.htm
Website: www.scope.org.uk/dial
DIAL is a national network of approximately
120 local Disability Information and Advice Line
services run by and for disabled people. Advice
may include help with disability related benefits
and appeals.
Part of the Department for Work and Pensions,
the Pension Service provides information about
pensions and other pensioner benefits in the UK. DisabledGo
The Pensions Advisory Service
Website: www.disabledgo.com
Tel: 0845 601 2923
Website: www.pensionsadvisoryservice.org.uk
Other Advice & Information
Age UK
Tel: 0800 169 6565
Website: www.ageuk.org.uk
Age UK’s services include national information
and advice lines, local services, factsheets and
support on issues including caring, consumer
rights, health, housing, income and pensions
and leisure.
GOV.UK
Website: www.gov.uk
A government website providing information
on a range of government services and benefits,
including for motorists, parents and disabled
people, plus Britons living abroad and the over 50s.
Other Health Matters
Action for Blind People
RNIB Helpline: 0303 123 9999
Website: www.actionforblindpeople.org.uk
Citizens Advice Bureaux (CAB)
Action for Blind People is a national charity with
local reach, providing practical help and support
to partially sighted people of all ages.
See your local phone book for details
Action on Hearing Loss
Websites: www.citizensadvice.org.uk and
Information Line: 0808 808 0123
www.cas.org.uk (Scotland)
Tinnitus Information Line: 0808 808 6666
www.citizensadvice.co.uk (Northern Ireland)
Website: www.actiononhearingloss.org.uk
CABs provide services to help people sort
out benefits, rights, legal, money and other
problems. Free, independent and confidential
advice is provided face-to-face and by
telephone, with some branches offering home
visits and e-mail advice.
Action on Hearing Loss aims to make life
better for deaf and hard of hearing people,
by providing information and support on all
aspects of deafness, hearing loss and tinnitus,
and services including residential care,
communication support, assistive equipment,
campaigning and involvement in biomedical,
scientific and technical research.
+
support services
The Pensions Advisory Service is an
independent, non-profit organisation providing
information and guidance on pensions (state,
occupational, personal and stakeholder). It also
may help with problems, complaints or disputes
with occupational or private pensions.
DisabledGo provides free detailed access
information for disabled people across the UK
and Ireland. Search from a variety of goods and
services, including accessible hotels, restaurants,
banks and parking facilities in over 50 UK towns,
cities and London boroughs.
33
+
Arthritis Care
Diabetes UK
Tel: 0808 800 4050 (10.00am-4.00pm, Mon-Fri)
Diabetes UK Careline:
Website: www.arthritiscare.org.uk
Tel: 0845 120 2960 (Monday-Friday,
9.00am-5.00pm)
Arthritis Care is a UK-wide voluntary
organisation for people with arthritis.
Asthma UK
Adviceline: 0800 121 62 44
Website: www.asthma.org.uk
Asthma UK is the charity dedicated to improving
the health and wellbeing of the 5.4 million people
in the UK whose lives are affected by asthma.
The Bladder and Bowel Foundation
Helpline: 0845 345 0165
support services
Website: www.bladderandbowelfoundation.org
The Bladder and Bowel Foundation is the UK’s
leading charity providing information and
support for people with bladder and bowel
control problems, their carers, families and
healthcare professionals.
British Association for Counselling &
Psychotherapy (BACP)
Website: www.bacp.co.uk
The BACP website includes lists of local
counsellors and psychotherapists, factsheets
and other publications as well as information
about training, supervision and conferences.
British Complementary Medicine Association
Tel: 0845 345 5977
Website: www.bcma.co.uk
The BCMA website provides information on
different complementary/alternative therapies,
a directory of registered practitioners, events
and links.
Department of Health
Website: www.dh.gov.uk
The Department of Health website contains
information related to health issues, NHS and
patient care.
34
Website: www.diabetes.org.uk
Diabetes UK is the leading UK charity that cares
for, connects with and campaigns on behalf of
all people affected by and at risk of diabetes.
Dr Foster
Website: www.drfosterhealth.co.uk
Dr Foster is the UK’s leading provider of
comparative information on health and
social care services. Search the database
for information on health conditions and
treatments, hospitals, consultants and
complementary practitioners or download the
Hospital Guide.
Fibromyalgia Association UK
Helpline: 0844 887 2444 (Mon-Fri,
10.00am-4.00pm).
Website: www.fibromyalgia-associationuk.org
Fibromyalgia Association UK is a registered
charity that provides information, advice and
support to people with the condition, their
families and medical professionals.
IBS Network
Tel: 0114 272 3253
Website: www.theibsnetwork.org
The IBS Network is the national charity for
people with Irritable Bowel Syndrome (IBS). The
website includes information about campaigns,
research and support groups.
lnstitute for Complementary and Natural
Medicine (ICNM)
Tel: 020 7922 7980
Website: www.i-c-m.org.uk
The ICNM provides the public with information
about complementary medicine, administers the
British Register of Complementary Practitioners
and promotes good practice and research in
the field.
Limbless Association
Helpline:
Tel: 0800 644 0186
Website: www.limbless-association.org
The Limbless Association provides information,
advice and support for people who are without
one or more limbs. The website includes
information about products and resources,
including orthotics, grants and funding and
assistive technology.
Macmillan Cancer Support
Tel: 0808 808 00 00
Website: www.macmillan.org.uk
Macmillan Cancer Support provides practical,
medical and financial support to those affected
by cancer.
diagnosis and treatment of osteoporosis. The
website has downloadable information sheets,
details of other publications, research and
support groups.
NHS Choices
Website: www.nhs.uk
NHS Choices provides information and advice
on healthy lifestyle choices, has a Health A-Z
listing more than 800 conditions and treatments
and enables visitors to access individual hospital
facts and figures and patient opinions.
The Patients Association
Helpline: 0845 608 4455
Website: www.patients-association.com
Scotland:
Relate (England and Wales)
Scottish Association for Mental Health
Tel: 0300 100 1234
Tel: 0141 530 1000
Website: www.relate.org.uk
Website: www.samh.org.uk
Scotland:
Northern Ireland:
Relationships Scotland
Northern Ireland Association for Mental Health
Tel: 0845 119 2020
Tel: 028 9032 8474
Website: www.relationships-scotland.org.uk
Website: www.niamhwellbeing.org
Northern Ireland:
MIND is the leading mental health charity
in England and Wales. Services include a
confidential helpline, support network,
counselling, befriending, advocacy, consultancy
and training as well as campaigns and
publications.
Relate Northern Ireland
MIND
Tel: 0300 123 3393 (MindinfoLine)
National Osteoporosis Society
Osteoporosis Helpline: 0845 450 0230 (MondayFriday, 9.00am-5.00pm)
Website: www.nos.org.uk
The National Osteoporosis Society is the only
national charity dedicated to the prevention,
support services
Website: www.mind.org.uk
The Patients Association is an independent
charity that highlights the concerns and needs
of patients. It aims to reduce health inequalities
by helping patients to be better informed and
by campaigning for them to have the right to be
involved in decision-making.
Tel: 028 9032 3454
Website: www.relateni.org
Relate provides a confidential counselling
service for people in marriage and other
personal relationships.
RLS-UK/Ekbom Syndrome Association
Helpline: 01634 260483 (Mon and Thurs,
9.00am-11.00am)
Website: www.rls-uk.org.
RLS-UK provides information and support
for those with Ekbom (Restless
+
35
+
Leg) Syndrome and their families and raises
awareness of the condition amongst the
medical profession.
The site includes diagnostic information and
details of research.
Employment, Leisure & Interests
Royal National Institute of Blind People
(RNIB)
Tel: 08457 474747 (Monday-Friday,
8.00am-8.00pm, Saturday 9.00am-1.00pm)
Helpline: 0303 123 9999
Website: www.acas.org.uk
Website: www.rnib.org.uk
Northern Ireland:
RNIB is the UK’s leading charity offering
information, support and advice to almost two
million people with sight loss.
Labour Relations Agency
Samaritans
ACAS aims to improve organisations and
working life in England, Scotland and Wales
through better employment relations.
Tel: 08457 90 90 90
support services
Website: www.samaritans.org.uk
Samaritans provides 24-hour confidential
emotional support for people experiencing
feelings of distress or despair, including those
that may lead to suicide.
Scoliosis Association UK (SAUK)
Helpline: 020 8964 1166
Website: www.sauk.org.uk
SAUK is an independent support group for
people with scoliosis in the UK, providing
information and support though its helpline. It
offers contacts for shared experiences and aims
to educate the public about treatments and
research.
ACAS (Advisory, Conciliation and Arbitration
Service)
ACAS Helpline/Advisory Service:
Tel: 028 9032 1442
Website: www.lra.org.uk
British Wheel of Yoga (BWY)
Tel: 01529 306851
Website: www.bwy.org.uk
The BWY is a registered charity, the largest yoga
organisation in the country and the national
governing body for yoga. Search the site for
local classes, training information and FAQs.
English Federation of Disability Sport (EFDS)
Tel: 01509 227750
Website: www.efds.net
Scotland:
Scottish Disability Sport
The Stroke Association
Tel: 0131 317 1130
Stroke Helpline: 0303 3033 100 (Monday-Friday,
9.00am-5.00pm)
Website: www.scottishdisabilitysport.com
Website: www.stroke.org.uk
The Federation of Disability Sport Wales
The Stroke Association is the only UK-wide
charity solely concerned with combating stroke
in people of all ages. It funds research into
prevention, treatment and better methods of
rehabilitation, and helps stroke patients and
their families directly through its Rehabilitation
and Support Services.
Tel: 0845 846 0021
Wales:
Website: www.disabilitysportwales.com
Northern Ireland:
Disability Sports NI
Tel: 028 9038 7062
Website: www.dsni.co.uk
EFDS is the national body responsible for
developing sport for disabled people in England.
36
National Association of Swimming Clubs for
the Handicapped (NASCH)
Open University – Services for disabled
students
Tel: 01329 833689
Website: www.open.ac.uk/disability
Website: www.nasch.org.uk
These webpages give advice and guidance for
OU students with a disability.
NASCH encourages the development of
swimming clubs, and runs swimming galas
and training courses and an awards scheme to
encourage safe swimming practices.
National Trust (England, Wales and Northern
Ireland)
General and Membership enquiries:
Tel: 0844 800 1895
Parasport
Tel: 020 7842 5789
Website: www.parasport.org.uk
Parasport aims to make it easier for members
of the public to take up disability sport by
providing information about sports and
sporting opportunities in local areas.
Website: www.nationaltrust.org.uk/accessforall
Tel: 01372 841100
Scotland:
Website: www.qefd.org
The National Trust for Scotland
Queen Elizabeth’s Foundation is a charity
working to equip disabled people with skills to
increase independence, mobility, and help them
into employment.
Tel: 0844 493 2100
Website: www.nts.org.uk
The National Trust produces a free Access Guide,
with information about disability access to its
properties, gardens and parks.
Admit One card allows free entry for a disabled
visitor’s companion. Self-drive and volunteerdriven powered vehicles are available at some
larger gardens and parks.
support services
Tel: 01793 817634
Queen Elizabeth’s Foundation for Disabled
People
Access for All office/ Admit One card enquiries:
Links passes allow half-price admission to most
Trust buildings and gardens for elderly and
disabled group visits arranged by organisations
affiliated to NHS, local government or
disability charities.
Open College of the Arts
Website: www.oca-uk.com
The Open College of the Arts is an educational
charity dedicated to widening participation
in arts education. Around 3,000 students each
year study creative and visual arts by open and
distance learning.
+
37
+
Remploy
Tel: 0845 155 2700 (General enquiries)
Website: www.remploy.co.uk
Remploy finds jobs for disabled people in major
organisations, as well as its own manufacturing
and service businesses.
Shaw Trust (England, Scotland and Wales)
You can find a list of trade unions on the
Certification Officer website at www.certoffice.
org/Nav/Trade-Unions/Active.aspx
Tel: 01225 716300
Yoga for Health and Education Trust
Website: www.shaw-trust.org.uk
Website: www.yoga-health-education.org.uk
Shaw Trust is a national charity providing
training and work opportunities for people who
are disabled or have health difficulties.
The Yoga for Health and Education Trust is a
not-for-profit company and charity dedicated
to bringing yoga to all, whether fit and well
or disabled. Search the site for information on
remedial yoga and for local classes. n
Trade unions
support services
If the company or organisation you work for has
Benefit claim forms
If you receive a benefit claim form from
the Department for Work and Pensions,
particularly if it is a form asking about your
illnesses and disabilities, such as an ESA50
Limited Capability for Work Questionnaire, a
Disability Living Allowance review form or a
Personal Independence Payment ‘How your
disability affects you’ form, we would advise
you to get professional help with completing
it. This should give you a better chance of
being awarded the appropriate benefit if
you meet the criteria. As soon as you receive
such a form, or are given notice that a form
will shortly be sent to you, please contact
Support Services and we will try to book you
a telephone appointment with Carol Hughes,
our Disability Benefits Advisor.
There is always a limited time frame for
completion and return of these forms, so
please don’t delay in seeking help. Due to
the high demand for appointments, Carol’s
schedule fills up very quickly. We often receive
calls from members who do not act promptly
38
a union, you can ask the union representative
about joining. Contact details for your union ‘rep’
may be included in your company handbook
or intranet site or displayed on a union
noticeboard at your place of work.
and we are therefore unable to book them an
appointment before the deadline has expired.
If we are unable to book you an appointment
with Carol within the designated time frame,
we can give you contact details of your
local Citizens Advice Bureau, DIAL (Disability
Information and Advice Line) office or other
service. Again we advise you to seek
professional help if possible as any delay
could result in reduced or lost benefit.
In any event, it is crucial that you keep copies
of completed forms and all relevant paperwork
in case you need to refer to this information
later, perhaps to enlist help from medical
professionals or with any appeal.
A reminder that if you have a Wednesday
appointment with Carol, she will phone you.
If you have a Friday appointment, you need
to phone Central Office on our freephone
number 0800 018 0586 at the designated
time and ask to speak to Carol. If you need to
cancel or reschedule an appointment, contact
Support Services on the number above.
Paralysed with
fear
Review by Laura Skorupa
Paralysed with fear – the
story of Polio by Gareth Williams
Palgrave Macmillan, London, 2013
ISBN-10: 1137299754 | ISBN-13: 9781137299758
I
n Paralysed with fear Gareth Williams, criticallyacclaimed author and Professor of Medicine at
Bristol University, states that Poliomyelitis has
“probably shaped the modern world to a greater
extent than we might suspect”.
But Paralysed with fear is so
much more than a linear
history of one disease.
Williams spins a complex
web, looking at the many
ideas and theories – some
valid, some not – that have
shaped medical history, as
well as breakthroughs such
as the discovery of viruses
and bacteria and the early
development of vaccines and physical therapies.
He highlights the paranoia, suspicion and
rivalry amidst scientists and academic life, the
scope for conspiracy theories within science
and medicine, and the objections to vaccines,
religious or otherwise.
Paralysed with fear never loses sight of the
people behind the history – this is a human
story, humanely told. He includes real-life
accounts of people who contracted Polio,
including a personal story from a Fellowship
member. Williams also acknowledges that
his account would be ‘incomplete’ without
recounting what happened
to some of the ‘colourful’
key players in the story,
including Polio vaccine
developers Jonas Salk
and Albert Sabin and the
maverick, untrained nurse
Elizabeth Kenny, after their
contributions had been made.
support services
This book explores the medical and social
history of Polio and the many landmarks on
the way, beginning with its first appearance in
medical literature in 1789,
through the epidemics
of the nineteenth and
twentieth centuries, the early
treatments and development
of Polio vaccines and the
global Polio situation today.
While one would expect an explanation of how
the Poliovirus affects the body (here presented
in great detail), Williams’ discussion of Post
Polio Syndrome, why it occurs and his question
as to why it took so long to be recognised, is a
welcome addition.
Williams admits his ‘naïve
hope’, when beginning to
write this book in 2011, that
he could end it with a ‘pithy
epitaph’ for Polio. Discussing
the Taliban-ordered murder
of vaccinating healthcare
workers in Pakistan in 2012, he
states: “We can only hope that
human nature will transform itself from problem
to solution and find a way through the impasse.”
Authoritative and insightful, warm in tone and
compulsively readable, Paralysed with fear is a
welcome addition to the Polio history canon. n
39
PPS
o Post Polio Syndrome: A practical guide (£5 + £2.50 P&P) o Post Polio Syndrome: An introduction
o Pacing for Activity & Exercise
o List of Healthcare Professionals
o Going Into Hospital
o Cold Intolerance
o Complementary Therapies o Medication
o Palliative Care
o Dental Care & Anaesthesia
o BPF Support Services
o Healthy eating – a guide for people with Polio and Post Polio Syndrome
o Swallowing problems – a guide for people with Polio or Post Polio Syndrome
o Pain and how to manage it – a guide for people with Polio or Post Polio Syndrome
Orthotics
o Orthotic Services
o Callipers and Insoles through the NHS
o List of Orthotics Manufacturers
o Orthopaedic Footwear through the NHS
o Problems with Footwear and Orthoses?
o Orthotics and Surgical Footwear thro’ the Private Sector
Benefits
o Disabled Facilities Grants Guide
o Disability Living Allowance – Guide to filling in the form (upgrades only)
o Attendance Allowance – Guide to filling in the form
Useful Organisations Contact List
o Welfare Rights, Benefits & Legal
o Other Advice & Information
o Life, Home & Care
o Polio & Post Polio Syndrome Organisations
o Other Health Matters
o Employment, Leisure & Interests
o Transport, Mobility & Equipment
o Grants & Funders
o Other (Please state and we will try to find!) ………………………………..…..…………………………………………………………………………
……………………………………………………………………………………………………………………………………………………………. . . . .
NAME………………………………………………………………………………….………………….
ADDRESS…………………………………………………………………………………………………
………………………………………. POSTCODE ………………………………...……………………
TELEPHONE………………………………………………….AGE ………………………………………
Please send this form to Support Services, British Polio Fellowship, Eagle Point, The Runway, South Ruislip, Middlesex HA4 6SE
Phone: 0800 0180 586 Email: [email protected]
In addition to the information and support we provide over the phone, the Support Services team also produces a wide range of
information leaflets and factsheets that can be sent to you on request. If you would like to receive any of these, please tick the appropriate
box(es) below. All leaflets are free except Post Polio Syndrome: A practical guide.
Information available from Support Services
support services
$
40
Our charity partners
These pages are dedicated to the commercial companies who pay The British Polio Fellowship a
handsome commission if you buy their products and services. This is a tremendous way for you to
donate to The Fellowship simply by selecting products you would be buying anyway.
Check out the Fellowship’s ebay site,
grab yourself a bargain and help The
Fellowship at the same time.
The goods on offer change every 10
days or so keep looking.
http://donations.ebay.co.uk/
charity/charity.jsp?NP_ID=35779
Do you have an old phone that you can
Home Phone * Mobile
* Internet * Gas
Electricity
give to Recycle 4 Charity? To date we have
raised over £1,500 from mobile phones
and printer ink cartridges sent for recycling
and hope to raise even more this year.
The Fellowship receives a £5 donation for
every customer who switches to the Utility
Warehouse, plus a percentage of your
monthly spend, at no additional cost to you.
following website and register to receive
www.utilitywarehouse.org.uk/b71847
your bags direct.
Tel: 0800 1313 000 and quote B71847
our charity partners
Having a spring clean?
If you would like a recycling bag please
phone 0208 836 3679 or log on to the
www.recycle4charity.co.uk
41
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friends, and for supporters of British Polio Fellowship.
Does your footwear reflect your lifestyle?
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you'll get a 5% discount if you purchase your travel
insurance online!
• I live with the effects of Polio.
• 30 years in the trade.
• Member of The British
Polio Fellowship’s Specialist
Orthotics Panel.
• I specialise in taking on the
most difficult footwear for disabled people.
• Limited home visiting service.
Opening hours:
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and 9am - 1pm Saturday
British Polio Fellowship receives a
donation for every policy sold, at
no extra cost to you.
My promise:
home insurance • motor insurance
travel insurance • life assurance
funeral planning
British Polio Fellowship is an Introducer Appointed Representative of Heath Lambert Limited.
Unique is a trading name of Heath Lambert Limited, which is authorised and regulated by the
Financial Services Authority. Registered Office: 9 Alie Street, London E1 8DE. Registered Number:
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This plan is provided by Dignity Pre Arrangement Limited. A company registered in England No.
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42
THE CORDWAINER
• £50 donated to The British Polio Fellowship for each
new footwear order. (£25 for returning customers)*
• To support you if you want to have the footwear I
make supplied through the National Health Service.
* Applies to all orders 1 month from magazine print date.
Tel: 01433 621623
www.thecordwainer.co.uk
Diary dates
South of England Region
Worthing & Sussex Branch
15 September – Regional Lunch
12 July – Worthing Flag Day
Merseyside Branch
20 July – Summer trip
14 September – Boat trip
26 July – Planetarium
3 August – Crowborough Flag Day
11 August – BBQ
31 August Flag day East Grinstead
Berkshire Branch
15 September – Regional Lunch,Reading
12 July – Pampering afternoon
6 October – Branch Lunch, Arundel
August – to be confirmed
19 October – Get together, Durrington
7 September – trip to Buckingham Palace
16 November – Get together, Durrington
15 September - Regional Lunch at the Calcot
7 December – Grand Xmas Draw, Durrington
19 October - Tea at Cliddesden
16 November – Phoenix Centre – Tea and
games afternoon
7 December – Christmas Lunch
Our charity partners
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that provide solutions
for mobility,
bathing/showering,
dressing, continence
management,
personal/home safety,
home and kitchen,
eating and drinking,
and general health
and wellbeing.
Nottingham Rehab Supplies,
Clinitron House, Excelsior Road,
Ashby de la Zouch, Leics, LE65 1JG.
43
National Indoor Games
W
2014
e are pleased to announce that the 2013/2014 National Indoor Games will be held at the
Leicester Marriott Hotel on 14-16 March 2014.
In due course members will receive a letter from their Regional Chair inviting them to
attend the Regional Games selection process. The Indoor Games are open to all paid up members
of The British Polio Fellowship including Central Office members. Please contact the Regional
Representatives in your area – contact details and dates for the qualifying heats are below.
On behalf of the Championship Committee we wish you the best of luck and look forward to seeing
you at the National Games in 2014.
Region
EAST MIDLANDS
HOME COUNTIES
NORTH
branch & regional news
NORTH OF ENGLAND
NORTH WEST
SOUTH OF ENGLAND
SCOTLAND
WALES
YORKSHIRE
WESTERN
44
Regional Rep’s
Don Bryan & Sandra Clegg
Tel: 01162 402057
Miss Margaret Williams
Tel: 0208 644 8244
Mrs Beryl Bartlett
Tel: 0191 281 8977
or Mr Bob Howell
Tel: 0191 567 6646
Email: bob.howell2402@
btinternet.com
Mr Steve McCarthy
Tel: 01925 415721
Email: Stephenmccarthy1957@
hotmail.co.uk
Miss Mary Gillies
Tel: 0787 0811 732
Mr Archie Leyden
Tel: 01236 768 438
Mrs Coral Williams
Tel: 01633 838130
Mrs Pat Parker
Tel: 01482 569 049
Email: Silverfox4043@silver4043.
karoo.co.uk
Glynn & Wendy Lloyd
Tel:01531 820054
Date of heats
October (date to be confirmed)
26 October 2013 – 10.30
Jim McDonald Centre, McDonald
Court, Highview, Hatfield, Herts
Date to be confirmed
26 October 2013
9 November 2013
Date to be confirmed
14 September 2013
Bethel Baptist Church,
Whitchurch, Cardiff
20 October 2013
Featherstone Library
19 October 2013
Yew Tree Community Centre
Redwood Road, Walsall
Right on
target
On a lovely sunny day on 8
June, 32 members of the
Yorkshire Region met at the
local Air Rifle Club, together
with two Scottish members, for
what has become one of the
highlights of our calendar.
It doesn’t matter if you have
never held a rifle before or if your disability is
such that you think you couldn’t hold or aim
one. The lads at the club find a way to make sure
no-one is left out. The range is in an old quarry
that, apart from the pinging of pellet on target,
is a very peaceful place, with an accessible
woodland path and targets hidden amongst
the trees.
Please look at the club website www.
pontefractairrifleclub.co.uk which has a good
photo section that will give you some idea of
the lovely place we enjoy.
Jan Taylor
Welsh Region AGM
The Welsh Region AGM 2013 will be held on
Saturday 10 August 2013 from 1pm-3pm at St
Mary’s Centre, Church Hall, St Mary’s Place, Port
Talbot, SA12 6DZ.
Light refreshments will be provided (at a
small cost). To help us know how many
members to cater for, we would be grateful
if any members who wish to attend the AGM
please let us know by contacting one of the
people opposite before 28 July.
For more information and directions contact:
Mrs Joan Deverell Tel: 07738471797 Email:
[email protected]
Every year we say that the
members of Pontefract Air Rifle
Club pull out all the stops to
give us a great day. It is always a
true statement but then every
year they seem to do a little
more. This year they had found
a sponsor for our event and so
another competition was added
to the day, a team trophy.
Mrs Coral Williams Tel: 01633 838130 Email:
[email protected]
Mrs Angela Locke Tel: 01633 770708 Email:
[email protected] Mr Mick Cranfield Tel: 01792 774334 Email:
[email protected]
Angela Locke
45
South of England Region
About the Region
The South of England Region consists of seven Branches – Berkshire, Dorset, East Kent, North West
Kent, Southampton, Sutton and Worthing and West Sussex.
Currently Bob Stephens (Worthing) is Chairman; Mary Gillies (Worthing) is Secretary and Madeleine
Henry (Southampton) is Treasurer. Each Branch sends along representatives to share ideas and
thoughts at two meetings per year. Discussion on a joint event, the Regional Lunch, takes place and
we are especially keen to hear about each other’s trips and outings, as this gives us venue ideas for
our own Branches. Our joint event, the annual Regional Lunch, is planned for Sunday, 15 September
2013 at The Calcot Hotel, Reading RG31 7QN. If you are interested, but do not belong to a Branch,
get in touch with Sue.
Another event of note is the Regional Games, which will be held at The Phoenix Centre in Reading
on Saturday 9 November. Games will include Boccia, Scrabble, Standing Darts, Seated Darts,
Dominoes, New Age Kurling, Cribbage and Draughts. From these games, a team will be selected to
represent the Region in the National Games next year. Any members are welcome – the seriously
competitive ones and also those who want to come along for the socialising and a bit of fun! If
you are interested in participating, live in the region, but are a Central Office member rather than a
branch member, contact our Sports Rep, Mary Gillies on 07870 811732.
Anyone interested in learning more or in making contact with any of the Branches can contact
Sue Brown on 01635 253222 or at [email protected] and she will put you in touch.
Worthing & West Sussex Branch
We are persevering with our
fundraising agenda, but Flag
Days are not currently producing
the excellent results of previous
years, although still giving our
collectors a nice day out. Actually,
our fundraising was given a
tremendous boost last weekend
with a strawberry tea (with super raffle and
stalls) organised by the Worthing Cissbury Trefoil
Guild for our Branch. To our amazement, about
90 people turned up and they raised £650 for us!
Very well done and thank you.
The Branch has visited a tourist farm (Anne,
Tony and Emmie pictured) and later an excellent
Animal Sanctuary, Reysted near Lewes. In July
we will be visiting the Planetarium in Chichester
and having our Annual Barbecue (though the
46
family one this weekend was
indoors as the tent was blown
away!).
In June we held a meeting to
discuss Post Polio Syndrome (PPS),
with Laura Skorupa from Central
Office sharing her extensive
knowledge with some 46 of our
members. We all agreed that Laura gave an
excellent address and answered any questions
expertly, especially from those new members
who had never really understood what PPS
really meant.
Already a busy summer, with Regional and
Branch Annual Lunches, Get Togethers and even
more Flag Days yet to come.
More branch information is on our website –
www.worthingbpf.co.uk
North
West Kent
Branch
Berkshire Branch
Our annual review was held
in May and, for some of us, the
highlight had been a trip to see
Billy Elliot at the Victoria Palace
in London. The young lad who
played Billy was incredible!
One Big Day at Bluewater in
July will see exhibitors showing
cars, wheelchairs and scooters,
with a chance to test drive a
hand-controlled car, but not a
drive from wheelchair car. As
Plans are in place for a
the Mobility Roadshow will be
pampering afternoon at the
Phoenix Centre in Reading on 20 held in Telford this year, this
will be a chance to see what is
July and a visit to Buckingham
available nearer home.
Palace on 7 September.
give us all a wonderful tea with
sandwiches, cakes and cream
scones…this always goes
down well!
June is always cream tea
month and this year was no
different. A member’s family
and friends worked hard to
We are arranging an outdoor
event for July and on Sunday
14 July, there will be a trip to
Folkestone and a carvery lunch
at the Burstin Hotel.
There will be socials on 3
August and 7 September.
East Kent Group
The East Kent Group wants to hear from people
in our area. We have an active social life and try
to provide interesting speakers at our socials,
which are held every other month from March at
Sellindge Village Hall, Kent.
We have an afternoon lazing on the River
Medway, 20 August at 2pm. All wheelchair
spaces have been booked, but there are still two
or three spaces available for non-wheelchair
users – don’t worry about access, they have a lift
to hoist your yardarm and let you down gently
into the boat. Please ring the Group Leader for
details: 01233 732534.
We have a speaker from Kent Air Ambulance at
our next meeting on 26 September in Sellindge
Village Hall at 2pm.
Because of concerns about bad weather around
late November and December, the group has
now voted to meet in October for an Annual
Lunch. This year we will be meeting at the Red
Lion at Bridge near Canterbury, mid-day on 24
October. Please ring for details.
Having had to cancel plans
for last year’s trip due to high
water levels, we managed,
with some sunshine, to enjoy
our river trip in May. Using
the specially adapted boat
from The Rivertime Boat Trust,
we travelled both up and
downstream enjoying the
natural and manmade sites. The
day was completed with lunch
at the nearby Toby Carvery.
Even if you can’t come along to our socials,
please ring the Group Leader if you want to have
a chat about concerns or have any queries.
47
your letters
Every issue we have a bunch of carnations courtesy of
Le Tourneurs to send to the writer of one letter, so send
in your letters now! This issue Margaret Wheatley tells
how she did get her MP to act on the issue of Post Polio
Syndrome (PPS).
Please note that as The Bulletin is made available on the
internet, your letters may be read by a wider audience. If you
would prefer for your name to be withheld, please let us know when you write.
Write to your
MP
I thought it was a really good idea to include a
sample letter in the last Bulletin, informing GPs
about Polio and Post Polio Syndrome.
third diagnosis). This number is likely to include
multiple visits by individuals. All admissions were
for people born prior to the 1960s.“
I made several copies that I left at my GP’s
practice. I also wrote to my local MP, Austin
Mitchell, and he wrote to Norman Lamb,
Minister of State for Care and Support. He
also raised the issue of Post Polio Syndrome
with Helen Kenyon, Deputy Chief Executive of
the North East Lincolnshire Commissioning
Group. She replied but said relatively little is
known about the extent and epidemiology of
PPS within our area, but added: “If the 120,000
cases of PPS in the UK is accurate, it would be
expected that there are at least 300 people living
with the condition in North East Lincolnshire.
Routine analysis of hospital data has identified
28 admissions in the last seven years (elective
and non-elective)where PPS was identified as a
diagnosis (NB: it was never identified as a primary
diagnosis and most frequently appeared as the
So it just shows, it is worth raising the issue
with GPs and MPs – hopefully it will help put
PPS more on their radar.
It is also quite fortuitous that my husband, who
is an elected member sitting on North East
Lincolnshire Council, has recently been given
the portfolio dealing with health and wellbeing
and care of vulnerable adults. He will be meeting
regularly with Helen Kenyon and her team and
so will hopefully be in a position to ‘bang the
drum’ for The Fellowship and its members.
Margaret Wheatley
Well done Margaret for helping to get the
message out there. We hope lots of members will
take the letter to their GPs, as well as lobby their
MPs. For advice on how best to do that, see the
article on p10.
Donal was a good friend
I read Eric Hiley’s letter in the May/June edition
of The Bulletin. I well remember Donal Brooks. My
brother and I were in Hendon Isolation Hospital,
then Stanmore Hospital, early in 1953. Donal
operated on my left hand, watched by my fiancé,
who was a young doctor. I became great friends
with the Brooks family, spending one month as
48
an au pair to their three young children. They
went on to have six! I recovered well and brought
up our four children but now suffer from PPS
quite badly. My brother survived bulbar Polio and
coped well but was unable to laugh or cough.
Donal was a huge part of our lives. Bridget Harrison
Tribute to a great
surgeon
Mr Brooks had a slight limp himself, as a result
of Polio I believe, and he would arrive in a big
shiny black car, which would be parked under
the trees. I was four when he began operating
on me. He started with my left hip, which was
dislocated, into which he inserted a metal
plate in order to give me some stability when
standing/walking (I’m 58 now and it’s still in
there!) He also operated on my hands and
arms, taking bone from my useless left arm and
inserting it in my right wrist; he put a pin in my
Your Forum needs
Do you, like me, experience days when you
lack the energy and motivation to do anything;
feel fed up and trapped indoors by our
common enemy, Post Polio Syndrome ( PPS)?
If the answer is YES and you have access to a
computer, why not log on and join a friendly
group of people at the Virtual Coffee Shop or
Bar on the BPF Forum? Share our laughs; rants;
rages and even moans!
When I first came across the Forum I was a little
shy and reluctant to post my thoughts or take
part in conversations, as I thought I might be
‘intruding’ on a tight little bunch of friends. But
having taken that initial plunge and said ‘Hello,
I’m a newbie’, I was given a warm welcome and
soon felt a valued member of the group. right thumb to give me movement, and also
operated on my left foot, which had ‘dropped’.
He would sit me on his knee prior to surgery
and draw in green pen around the areas he
was working on that day. I was very fond of him
although I always knew that after my ‘audience’
with him, I was getting the ‘gas’ on my face,
which I hated. Given the circumstances I found
myself in I realise now that I was very fortunate
to have a surgeon of his calibre to work on me.
The degree of independence I achieved in my
life is due in part to his ingenuity and foresight.
your letters
I was so pleased to read Mr Hiley’s article in
the May/June edition of The Bulletin; he asked
whether anyone remembers Mr Donal Brooks.
Mr Brooks was a wonderful surgeon who used
to visit Chailey Heritage when I was a small child
there in the late 1950s/early 60s.
I didn’t see the television documentary Mr Hiley
speaks about, but wanted to pay my own tribute
to Mr Donal Brooks, such a clever man whose
skills helped me so much.
Maureen Fenner
YOU!
Most days now I pour myself a coffee and sit
down to have a chin wag and a laugh or two
on the Forum; and yes, there are darker days
when I feel down and it helps a little to be able
to discuss how I am feeling, both physically and
mentally, with people who really understand
what I am experiencing. And as well as getting
support and tips on living with PPS, I often pop
into the ‘Potting Shed’ for gardening tips – a win/
win situation whatever kind of day I am having!
So why sit at home on your own when you
could be joining us on the Forum enriching
OUR mundane lives with YOUR news, thoughts
and interests? As Lord Kitchener once (almost)
said ... “YOUR BPF FORUM NEEDS YOU!” Looking
forward to meeting YOU on the Forum.
Rusty
49
Keeping up the
your letters
pressure
We have also contacted our local MP, Dr Phillip
Lee, who is a GP, to question the lack of morals/
ethics behind these proposed cuts. He replied
saying: “Ministers have met around 60 disability
organisations to hear their views and have
made significant changes as a direct result of the
Because my husband and I take these cuts in
mobility benefits very seriously, we will need to comments received from these organisations.
Ministers have also given a commitment that
find ways to show DWP and the forthcoming
they are continuing to develop the assessment
re-assessment how my medical conditions
criteria and they want to keep working with
are affecting me physically, psychologically
disabled people and their organisations to refine
and socially. I have constant fatigue and
the proposals further.”
debilitation, as well as swallowing difficulties.
Janet Hunt, Berkshire
I was so pleased to read Mr Hiley’s article in
May. Thank you for the information pack and
introduction to Berkshire Branch, all of which
made me feel that I am now not on my own in
life-long struggles with Polio/PPS.
Museum is a
real find
The Thackray Medical Museum is an impressive
visitor attraction, part of which charts the effects
of old illness and infections and their effect on
urban settlements.
Polio is but one such disease highlighted by the
museum and much to my surprise the display
is supplemented by the addition of an old iron
lung – the very same model that helped to save
my life when I was infected in 1961. The exhibit
highlighted how the modern design iron lung
became a product of the Morris carmakers in
Cowley, Oxford.
Reunited once again with the device I hadn’t
seen since childhood, I was fascinated by
everything about it. While talking to a member
of the museum staff, our conversation was
overheard by other visitors who became aware
that I was treated by a similar device. As a result
they wanted a first-hand account of what it was
like. Few of the other visitors knew what Polio
did, and knew even less about how the iron
50
lung operated. They were intrigued by my story
and were genuinely interested by how recent
my experience was. One of the visitors was an
aged nurse who used to treat Polio victims in her
earlier years. I explained the development of Post
Polio Syndrome and she was astonished. She had
never heard of the condition and was genuinely
surprised that Polio had a sting in the tail.
Chris Kushner
Rosalind Evans,
Holiday Programme
Co-ordinator
Email: rosalindevans@
britishpolio.org.uk
Tel: 020 8836 3686
Grant applications
H
ere is the timetable for submitting holiday grant
applications. The Panel normally meets in the middle of
the relevant month. To request an application form, please
contact Rosalind Evans on 020 8836 3686 or email:
[email protected]. Please remember to send
in your application well in advance of when you want to go on
holiday. Your travel date should be at least six weeks after the
relevant Grant Review Panel. Grant pledges are not made or paid
retrospectively. So, if you plan to go on holiday in November 2013,
your application should reach us before the end of August in time
to be considered at the September Panel meeting.
Applications received
Review Panel meets
Between 1 July and 31 August 2013
Between 1 Sept and 30 October
Between 1 Nov and 31 December
September 2013
November 2013
January 2014
If you are thinking about arranging a branch holiday and would like
financial assistance, contact Rosalind for application forms. We are
keen to offer support to Branches and Groups as well as individual
applicants. The same timetable applies for branch applications.
holiday programme
The Ron Scudamore
Holiday Programme
aims to provide
information and
financial assistance
to enable people with
Polio and Post Polio
Syndrome (PPS) to
enjoy accessible and
affordable holidays.
Classified advertising
The Classified Advertising
section applies to items
for sale or wanted.
Classified ads can be
placed for a maximum of
two issues. This service is
free to members. Nonmembers £5.00 for the
first 20 words then £0.20p
per word. Maximum
number of words 50.
Deadline for September/
October issue is 1August
2013. Send to: Shirley
Russell, Eagle Point, The
Runway, South Ruislip
Middx. HA4 6SE. Tel: 01953
451620. Publication of
classified ads does not
imply that The British
Polio Fellowship endorses
any goods or services.
FOR SALE
Electric Adjustable Bed – Head
and foot independently adjustable
via hand controller. Cream Jacquard
3’6” x 6’6 with unmarked memory
foam mattress and 2 washable
zipped covers. £250 ono. Contact
01276 510277.
Lift for Wheelchair – Ricon
Tril Lift. Rated Capacity 350KG.
Works off remote. £5,500. new. Will
accept £1,500 ono. Contact 01633
265357 or 07506992025.
Hotter Wedge Shoes Style”
Rosie” Black. Heel 1½”. Left size 7.
Right size 5. Cost £55.00 accept
£25.00 Including UK postage. Tel:
01202 485207.
Ladies Hotter Boots. Black/
Loganberry (indulge) Right Size
3. Left size 5 ½.. Shoes Metallic
Bronze (Calypso) Right Size 3.
Left size 5 ½. £25.00 per pair
incl. postage. These are suitable
to adapt for use with calliper
(sockets and lifts) Tel: 01603
438050.
Hotter Sandals – Left foot size
5 Right foot size 3. Brand New. 2
Pairs Beige/ 2 Pairs Navy. £25 per
pair. Postage Free. Contact 01502
560374.
Brand New – Four wheeled
Walker with brakes, bag on front
seat with compartment. Red 6
months old, only used once. Want
it to go to a good home. Contact
07514 758 495
Wanted
Double Mattress – Preferably
orthopedic. Must be in good
condition. Contact 01309 358 623
or 07874 368 981.
51
A man with
passion and flair
B
By Barry North
history corner
orn in 1911, Duncan Guthrie came
from a Scottish family but lived
his early years in London. He was
educated at Malvern College and then
went to Central America for two years
to manage the family coffee plantation.
On his return to England, Duncan chose
acting as a career and had parts in two
films, one of which was never screened.
And then came the war. During the
‘phoney war’ Duncan joined the
International Finnish Brigade and
travelled to Finland. As things heated
up and Germany over-ran Europe, it
became very difficult to get back to
Britain. Guthrie stowed away on a US
ship and travelled across the Atlantic,
using his acting skills to pass as an
American. He went to Canada and
joined the Royal Canadian Artillery
and with that organisation was posted Duncan Guthrie OBE 1911-1994
back to England, to West Sussex. He
publicise the need for support for Poliowas parachuted into France where he remained
disabled people. In the same year he organised
until the liberation of Paris. Then he saw service
a very successful exhibition, ‘Two Centuries
in Burma, receiving an injury to his leg from a
of British Humorous Art’, which was staged
botched parachute landing.
in London, Birmingham and Liverpool. The
After demob Duncan worked for the Arts Council Birmingham show was opened by Linda
Wesley, then four years old (the same age as the
where he met and married Prue. Three children
came along but before the oldest, Janet, was two fledgling Birmingham Branch of the Fellowship),
years old, she contracted Polio. The Guthries were assisted by the actor Michael Redgrave. The
Liverpool exhibition was graced by a visit from
devastated by the lack of resources that were
Princess Elizabeth who, the next year, would
available at that time to prevent and to treat the
become Queen.
effects of Polio, and set themselves the task of
doing something about it.
Fundraising seemed to be the best contribution
that Duncan could offer and he set about the
task with a zeal that never left him for the rest of
his life. Working with The Fellowship he seized
the opportunity of the 1951 Festival of Britain to
52
Duncan Guthrie moved on from The Fellowship
to inaugurate the Polio Research Fund, an
organisation that derived great benefit from
his flair and audacity in fundraising. He brought
the idea of ‘Christmas seals’ to Britain – small
stickers for fixing to Christmas card envelopes
raised by Guthrie’s organisation
funded 13 professorial chairs
in universities and medical
institutions, nine of which
still exist.
– and launched the scheme
by bringing a performing
seal from a local circus to the
Waldorf Hotel in London by
Daimler car. The seal refused
to use the lift but attracted a
great deal of attention (and
publicity) by waddling up the
staircase of the hotel; sadly, no
pictures of the event survive.
Top: opening of the exhibition
‘Two Centuries of British Humorous Art’
in Liverpool, 1951.
Above: HRH Princess Elizabeth tours
the exhibition accompanied by the
Fellowship Chairman Alderman A.E.
Reneson Coucher.
Duncan Guthrie was
awarded honorary
doctorates and degrees from
a number of universities and
received the OBE in 1976. He
died in Amberley, West Sussex,
on 12 October 1994, but his
work continues. n
history corner
Following the development
of the Salk Polio vaccine in
the US, Guthrie worked with
medical researchers to fund
the development of the British
version. He inaugurated
a Medical Committee of
distinguished doctors and
scientists to decide on the very
best research areas to which
to offer funding support. As
well as resourcing many vital
research projects the monies
The National Fund developed
into ‘Action Research for the
Crippled Child’ which,
in turn, became ‘Action
Medical Research’, the
organisation that has raised
and spent over £100 million
on medical developments
concerning disability
throughout the world.
Please share your memories
Do you have memories of Duncan Guthrie? Perhaps you have fundraising stories from past years
– will you share them with History Corner?
Please contact our Archivist, Barry North, at The Canon’s House, Stow Hill, Newport, NP20 4EA, tel:
01633 212077, email: [email protected] if you have something interesting to share.
53
advertising
Are you an
orthotist? If
so, you could
be advertising
here. Contact
Shirley
on 01953
451620 for
details.
LACERTA REHABILITATION LTD CLINICAL/ ORTHOTIC SERVICE
Lacerta Rehabilitation is based at the University of Salford. We have state of the art
clinical, assessment and manufacturing facilities. Both our clinical and technical staff
are very experienced in all areas of orthotics and specialist footwear.
We hold regular
multi-disciplinary
team clinics and
have many years’
experience of Polio
and Post Polio
Syndrome orthotic
problems.
Fitting of Intelligent Knee
Brace
Specialist in lower limb bracing including:
•Intelligent free knee bracing
•Lightweight carbon fibre bracing
•Bespoke design bracing
We specialise in spinal
and lower limb bracing,
together with specialist
footwear. We offer:
•Full orthotic/footwear Assessment in Gait
Laboratory
assessment
•Report service
•Manufacture/fitting of orthotic equipment
Fabrication of Leg Brace
For more information/appointments please contact:
Mike Gilligan (Senior Orthotist/Manager)
Tel: 07771 696 804. Email [email protected]
54
Your ad could be
here, reaching over
9,000 members, their
families and friends.
Contact Shirley
on 01953 451620
or email: shirley@
britishpolio.org.uk
WHEELCHAIR BREAKS IN THE LAKES,
near Keswick. Purpose-built self-catering
accommodation for two with additional family
accommodation available. Wheelover shower,
central heating, farm location with superb
views. Open all year. For colour brochure ring
017687 76380 or visit our website: www.
disabled-holiday.net
Cornwall - Nr Truro
advertising
TURKEY, sleepy seaside village of Akbuk, outside
seaside resort of Altinkum, 50 mins drive from
Bodrum airport. Two two-bed apartments
adjoined by balcony door. (Owner is a
Fellowship member and permanent wheelchair
user). Peaceful and relaxing. One apartment is
adjusted for wheelchair use with ramped access
and the other has five steps to access. Both are
level throughout. Will let together or separately.
Both apartments have two bed settees, so
maximum occupancy is six per apartment. 2
swimming pools and 2 children’s paddling
pools. Airport transfers arranged. Bookings
from £100 per week. Tel: 07946 510900, 01422
206106 or email: [email protected] for
photos, dvd and full details.
Two specially converted detached barns
on a family farm. Sleep 4 to 6 people.
Both fully wheelchair accessible.
Electric bed, air mattress, hoist and
rise/recline chairs available.
All bedrooms have ensuite wetrooms or
bathrooms. Care available.
For details
call 01726 883240 / 07762 173860
or visit www.treworgansfarm.co.uk
55
My mum is an
inspiration
This is the page for readers to share their life stories or memories. If you would like
to tell your story, please send details (around 400 words by email if possible) and a
good quality photo to the Editor, Laura McCaffrey, at the address on page 2. This issue,
Joan Wortley salutes the grit and determination of her mother, Joyce.
J
my way
oyce Ellis was born on 10 March
1923; she was the youngest of the
three daughters born to Mr and Mrs
Olson. Joyce was a normal little girl until
at the age of three she contracted Polio,
a disease that would have an impact
on the rest of her life. The illness left
Joyce with paralysis of her right leg. The doctor’s
prognosis was not good. Her mother was told
Joyce would never walk without a calliper and
she would always wear a special boot.
Mrs Olson refused to accept the prognosis
Joyce had been given and so with her mother’s
encouragement and Joyce’s own inner strength,
day by day she became stronger until eventually
she was able to wear normal lace up shoes, and
didn’t need the calliper. However the Polio had
left her with two odd sized feet, she now needed
a size 3 and size 7.
Over the years Joyce made friends with
someone who was able to help out and for years
they shared two pairs of shoes, allowing them
both to have an odd pair.
Joyce left school to take up a post as nanny
until her parents made the move to Sheffield
where they ran a pub. Joyce would work in the
local shop during the day and help in the pub at
night. This is where Joyce was to meet her future
husband. Desmond was the pot man in the pub.
Joyce and Desmond were married in 1942 when
Joyce was 19 years old. Two became three in
1947 when David was born, and four in 1949
with the birth of Joan. By 1954 the family had
moved from the pub to a house with a shop
and they stayed there until 1959. Joyce worked
voluntarily for WRVS for while and then she
56
worked in shops, and took cleaning
jobs – she was happy to do anything
that would ensure a good future for
her children.
Time off meant caravan holidays for
Joyce and Desmond; they loved the
outdoors and the country walks with the
children and their dogs, Joyce always leading
the way out at the front.
As 1999 came in, it was the start of a sad two
years for Joyce. First David died and then in
2001, Desmond. This had a huge impact on
Joyce, although in true style her inner strength
came through. Realising age was catching
up with her and her right leg, she acquired a
mobility scooter, although she was still taking
her dog out walking.
Sadly, by 2008 Joyce started to show signs of
Alzheimer’s and as the illness progressed, Joyce
caused concern for her family. Joyce’s health
declined and she was found wandering in the
snow looking for the dog that she no longer
had. The family had to make the decision for
Joyce to be moved into a care home. Joyce
settled in well and enjoyed helping staff and
meeting her new friends.
In 2011 Joyce fractured her right femur and had
pneumonia. She was admitted to hospital and
was very ill but once again she battled through.
In March 2013 Joyce reached her 90th birthday
– she is still enjoying life. It is 87 years since she
had Polio and at 90 she is still walking, although
these days she does need the help of a Zimmer
frame, but at her age who can blame her?
Well done Joyce, you are an inspiration. n

thebulletin jul-aug 2013 - British Polio Fellowship

Transcription

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