march/april 2014 - british polio · pdf filebsit e w w w. gardenhea l th. c o m o ......

Flower Biodiversity MixAttracts insectsStunning mix of annualflowers

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Plant HeightPlant Spacing

1cm (1/2 in)

AftercareKeep well watered in periods of dry weather. Flowering TimeJune – October

Sowing TimeMarch – MaySowing OutdoorsRake soil to provide a firm, even surface. Sow seeds thinly in pre-watered soil 1cm (1/2in) deep, lightly covering them with a little more soil. Keep moist until seedlings appear.

Sow outdoorsFlowering

Sow Mar-MayFlowers Jun-Oct

Packed Year EndingBest BeforeApproximate Seeds Batch Code

For more information please visit our websitewww.gardenhealth.com or write toWestland Horticulture, Alconbury Hill, Huntingdon, Cambs, PE28 4HY, UK

Promotional Packet — Not For Re-saleYour free wildflower seeds courtesy of Syngenta/Westland. See page 7 for more information.

sowing the seeds of hope

March/April 2014

AGE PROJECT ‘POLIO - A LIVING HISTORY’

SEE INSIDE FOR FULL DETAILS…

The British Polio Fellowship 2

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Chief Executive Ted Hill, MBE 0208 836 3671 [email protected]

Office Manager Sarah Mchugh 0800 018 0586 [email protected]

Director of Operations & Services Heike Kluever-Littlewood 0208 836 3682 [email protected]

Support Services Team Disability Benefits, Information & Advice Membership: Enquiries, Joining Branch & General Administration Support (Panels)

0800 018 0586 [email protected]

Holiday Programme

Co-ordinator Rosalind Evans 0208 836 3686 [email protected]

Marketing and Campaigns

Website/the bulletin Glenys Balchin 0208 836 3684 [email protected]

Advertising

Shirley Russell 01953 451620 [email protected]

Fundraising

Legacies and Events

Marianne Gkikas 0208 836 3679 [email protected]

Trusts Diane Ware 0208 836 3678 [email protected]

Administration, In Memoriam, Donations and Merchandise

Linda Davis 0208 836 3689 [email protected]

Finance Dawn Grafetsberger 0208 836 3675 [email protected]

Online Forum Members & Guests www.britishpolio.org.uk

Contacts

An invitation to join us. It costs just £25 to become a life member of The Fellowship. As a member you receive the bulletin every two months and can join your local Branch or Group. If you would like to know more about us before making up your mind please contact Central Office (details above).

THE BRITISH POLIO FELLOWSHIP

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]: www.britishpolio.org.uk

National Officers Chairman: Pam Jones Vice Chairman: Linda EversTreasurer: Aidan Linton-Smith

PatronsDr Moira Anderson OBE Lionel Blair Michael Cassidy CBE Sir Bobby Charlton CBE Joan Collins OBE Joe Fisher Hannah Gordon Andy Love MP Gordon Lumb Dr Geoffrey Spencer OBE

AmbassadorsJames Crisp, Julia Roberts, Anne Wafula Strike and Gareth Williams

Publisher: The British Polio FellowshipEditor: Laura McCaffrey, c/o Central OfficeDesign and production: Laura McCaffreyWriter: Nicola HillPrinting and distribution: Russell Press The British Polio Fellowship is a registered charity in England and Wales (1108335) and in Scotland (SC038863). A company limited by guarantee and registered in England and Wales No 5294321.

The Fellowship reserves the right to edit articles and letters submitted. The views expressed in the bulletin are not necessarily those of The Fellowship.

Publication of an advertisement does not imply that approval has been given to goods and services.

the bulletin is the bi-monthly magazine of The British Polio Fellowship, distributed free to members (circ. 9,000). Cost for non-members is £2.50 (annual subscription £15.00). Please send cheque/postal orders to Central Office at above address. Articles, letters, news items, photographs are welcome and will be published at the discretion of the editor. The publishers, authors and printers cannot accept liability for errors or omissions. Any transparencies, prints or artwork will be accepted at owners risk. All rights reserved. No part of this publication may be reported in any form without written permission of the copyright holder and publisher. the bulletin is printed on Magnomatt paper that meets and surpasses environmental standards and is recyclable. Only pulp with a low environmental impact is used and all integrated pulp is TCF (Totally Chlorine Free). Market pulp is either ECF (Elementary Chlorine Free) or TCF.

The British Polio Fellowship

ContentsNews from Central Office 3-17, 20

Fellowship merchandise 18-19

Fundraising news 21-22

Support Services 23-28

Your letters 29

Our charity partners 30-31

Branch & regional news 32-37

Holiday programme 38

History corner 39-41

Advertising 42-43

My way 44

Message from the Chief Executive

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W e started our 75th Anniversary Year with a preview of the film The Journey in which some of our members and

healthcare professionals talk about living with the late effects of Polio and Post Polio Syndrome (PPS). See pages 12-13 for more details.

We are hoping that our 75th Anniversary Year will be successful and effective for The Fellowship. Effective because all of our activity will focus on two aims – supporting our members and raising awareness of the late effects of Polio and PPS. On pages 6 to 10 you will find a broad outline programme of all of our events and campaigns. There is plenty there for everyone – from British Polio Month to National PPS Day, through Roadshows, a swimming event, possible sporting links and the traditional National Dance Championships.

I hope you will support us in promoting all these activities throughout the year, and helping us to get the message out there.

One way in which you can do this is by sending us your photos – of birthdays and anniversaries in particular, but also of any events you participate in. We may use them for publicity and in our social media campaigns, but also to promote our feeling of fellowship.

Fellowship products

We have also produced some useful merchandise to celebrate our Anniversary Year – see pages 18-19 for details and how to order. In time we hope to add a commemorative calendar and maybe even a jazz CD. Watch this space!

Feel the beat

We also had some spectacular events in the warm-up to our Anniversary Year. Notably our Ambassador Professor Gareth Williams helped our fundraising efforts by arranging a jazz accompaniment in the streets of Thornbury

By Ted Hill

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near Bristol – the Christmas shoppers were very impressed! See pages 16-17 for the full story.

Meanwhile, two members were awarded recognition in The Queen’s New Year Honours List. Malcolm Kielty and Michael Griffiths were granted an MBE and BEM respectively for their services to charity, Malcolm specifically for his support of The Fellowship. See page 20 for full details.

AGM and trustee recruitment

Our Annual General Meeting will be held on Saturday 20 September in Cardiff. As discussed in the last bulletin, this year we are looking to recruit new Trustees as four long-serving members will be standing down.

Barbara Wood Citizenship Award

The nominations for this award close on 13 June 2014 and you can nominate:

a) A person who has had Polio and who has made a significant contribution to the wellbeing of others in their local community.

OR

b) A person who has not had Polio and who has made a significant contribution to the wellbeing of others in their local community who have had Polio.

Please nominate by forwarding the nominee’s name, address and contact number, which category they fall into and why you are nominating them. Please also include your own name, address and contact details.

Richard Flint Competition

This competition is for original artwork, poetry or photography and the closing date remains 30 May. Full details are available from Central Office and are detailed on page 4 of the November/December 2013 issue of the bulletin.

Please forward nominations and entries to:

Ted Hill, Chief Executive The British Polio Fellowship

Eagle Point, The Runway, South Ruislip, Middlesex HA4 6SE

One Hundred Lengths of the Pool

For those of you who have not read the book by our Ambassador and TV presenter Julia Roberts, just a reminder that One Hundred Lengths of the Pool is available as an ebook on Amazon and for every copy bought a donation goes to The Fellowship.

European Disability Forum

In February, the European Disability Forum (EDF) presented its manifesto for the EU elections 2014 at the European Parliament. The event was organised in cooperation with the European Parliament Disability Intergroup and gathered a lot of MEPs; all of them expressed their full endorsement to the key priorities of EDF’s manifesto.

“Progress had been made on a legislative level but due to the crisis, the real situation of people with disabilities has got worse”, says EDF President, Yannis Vardakastanis. “We need the loud support of the European Parliament and of all candidate MEPs during the election campaign to promote a drastic change of policy whereby public finances consolidation is not at the expense of fundamental

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Julia Roberts and her book at the Team Splash event. The advan in the background was very effective in raising our profile.


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In 2013 it was agreed to review the current Memorandum & Articles (Mems & Arts) to update in line with current legislation and

charity law and to update the terms of office and election process of Trustees.

This review is now complete and the amendment will be put to the membership at the above meeting.

The main changes are:

• The Board moves to elections with 50% of the Board standing down on a rotating basis.

• That selection of the first group to stand down (Group A) be based on the number of votes cast in the 2014 election. The 50% with the lowest votes cast would form Group A and the remainder Group B.

• That Trustees can serve a maximum of three consecutive terms of three years and then must stand down for a minimum period of 12

months. They can then re stand for election and again serve a maximum of three terms of three years before having a break from office for a minimum period of 12 months.

• There be a maximum of eight Trustees with a maximum of four additional co-opted Trustees, i.e. 12 in total.

• Rule 31.5 states that the Board shall comprise at least 75% of people who have had Polio. It was agreed that the Mems & Arts be amended to read: “It is the intention of the organisation to aim that the Board shall comprise 75% of people who have had Polio”.

• A new clause on Conflict of Interest.

• Voting at general meetings now defines the provision of voting cards.

The full revised Mems & Arts will be available at the EGM or available in advance upon request.

Notice of Extraordinary General Meeting (EGM)To agree the revised Memorandum & Articles of The British Polio Fellowship

The meeting will take place as follows: Date: 14 March 2014Venue: Marriott Hotel, LeicesterRegistration: from 5pmMeeting starts: 6pm (Please note revised starting time)

rights and social cohesion in the EU and does not create more exclusion for those who are already excluded. We want persons with disabilities to participate fully in the democratic process and be able to enjoy their right to vote.“

Polio Conference

Don’t forget the Polio Conference in Amsterdam from 25-27 June 2014. The conference theme

‘Post Polio Syndrome – A Condition without Boundaries’ refers to the aim to exchange knowledge about the treatment of people with Polio in different age groups across the world to best preserve functioning throughout life.

For more information see p14 of the January/February 2014 issue of the bulletin or visit www.polioconference.com n


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This year is set to be action-packed, so we thought it would be

good to give you an idea of what is planned and how you can get involved.

While joining our members in celebrating this major milestone, as a fellow member, you will not need us to tell you that seven decades on, we still have a fight to see Post Polio Syndrome (PPS) widely recognised as a medical reality. Our anniversary is a perfect opportunity to remind the UK of this fact and we have many plans in place to mark this year for members and the public as one to remember.

Indoor Games

By the time you receive and have read this edition of the bulletin, the Indoor Games will be

upon us in Leicester (March 14-16). A full write-up and photos will be in the next edition in May/June.

Regional Roadshows – South East, North West, Wales

We are keen to provide a platform for our members and non-members alike to meet others living with the late

effects of Polio and PPS and to hear first-hand information of particular interest and relevance to people living with the condition. To do this, we are organising three Roadshows this year, with locations in the South East (Heathrow), North West (Manchester) and Wales (Cardiff ). The Welsh event will also host our Annual General Meeting (AGM) and is confirmed for 20 September, while the Heathrow and Manchester

2014 – The Journey begins...

Yorkshire won the Top Team Award at the 2013 National Indoor Games.

Zarina Hudda at the film preview.


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event dates are still to be decided. We are planning to use our 75th Anniversary and the Roadshow tour to commemorate and create a legacy that can help people to understand now and in future years what it is/was like to live with Polio, the late effects of Polio, and also PPS. There will be scope for all to contribute and play a part in capturing this important information, so look out for more details.

Sowing the seeds of hope with our support

Many charities successfully use a flower as a emblem that makes the charity instantly recognisable, which can then help with promoting awareness and fundraising.

We have chosen wild flowers as a fitting emblem for those living with the late effects of Polio and PPS as wild flowers are known to flourish against all odds and symbolise hope, longevity, freedom and regeneration.

Flowers are also a beautiful and traditional symbol of remembrance and commemoration around the world and the wild flower emblem will be used to help raise awareness of PPS Day this year – and in years to come.

We will be planting seeds

As part of this campaign, we will be working with schools, local community groups etc to plant seeds that can then be photographed and publicised when flowering.

We want you to plant seeds

On the front cover of this edition of the bulletin you have all received a pack of seeds in the hope that you will join in and plant them to commemorate the lives of all affected by Polio. To create some impact and support our campaign, it would be great to receive your photos and write-ups, including those of your friends and families planting seeds. Once the wild flowers are in bloom you can send us your photos so we can publicise these later in the year in the pages of the bulletin and also via local media, our website, etc. Why not check with your local schools and community groups if they would be prepared to plant seeds and have photographs taken?

If you have any other ideas on how we can use this generous seed donation to publicise and promote The Fellowship in your area, we’d love to hear from you. Please call or email Central Office (contact details on page 2).

Please note that subject to the British climate(!), seeds are generally planted between March and May and should flower around June to October. All being well, if the sun shines as experts are predicting and we get a hot summer after such a wet winter, the flowers will be blooming marvellous!

So here is how this all came about...

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Charity sows the seeds of a partnership allowing Polio and PPS awareness to blossom in 2014

In February The British Polio Fellowship announced an important new project with Swiss-based Syngenta AG and UK- based Westland Horticulture. The trio have joined forces to supply 10,000 packets of seeds to members of The Fellowship as part of events to mark the charity’s 75th Anniversary in 2014, by using flowers to remember those still living with the late effects of Polio and PPS.

Syngenta and Westland Horticulture are supplying Unwins Nature’s Haven Biodiversity Mix seeds, to be issued to all members. A limited number of additional seed packets are available if you want more, or want to send any to friends/relatives etc. Please contact Central Office for further information.

While the seeds and wild flowers themselves will be a physical, tangible expression of support for The British Polio Fellowship, we would also like to reflect the theme in other ways, through pin badges, for example.

The wild flower emblem will be launched to coincide with PPS Day in October, and may then be used for fundraising and awareness campaigns for PPS Days in years to come, closing the ‘circle of longevity’. We will give you a sneak preview of the finalised emblem via the bulletin, well before its formal October launch.

“The Fellowship has long wished to be able to issue seeds or flowers to commemorate Polio and PPS and thanks to this valuable sponsorship from Syngenta and Westland we can make this dream a reality,” says Ted Hill MBE, CEO of The British Polio Fellowship. “The seeds provide a selection of flower varieties to attract beneficial insects while at the same time creating a beautiful display of colour. They will flower right through from June to October, providing a fitting tribute to Polio and PPS.”

“At Syngenta, the Lawn & Garden business unit is dedicated to helping people connect positively

with their living environment. Our ambition is to enrich lives by making our environment inspiring and healthy,” says Jeff Cox of Syngenta.

“When we heard of the British Polio Fellowship’s desire to use flowers to promote its message, we were delighted to be able to help commemorate its 75th Anniversary in such a meaningful way in a country that is not only a significant market for us, but also home to a large number of our employees.”

Syngenta is one of the world’s leading agricultural companies and is committed to sustainability and best practice. Its Lawn & Garden partnership with Westland Horticulture in the UK and Ireland made it a natural fit with The British Polio Fellowship.

Westland Horticulture is one of the leading horticultural companies in the UK, creating unique and innovative gardening products.

“It is a pleasure to be able to do something practical to support the work of The British Polio Fellowship in its Anniversary Year,” says Brand Manager Louise Billingham. “We are proud to be able to help commemorate 75 years of effort to combat Polio and support people with PPS here in the UK.”

Starting early

The Anniversary has been trailed with the first ever PPS Day taking place in Winchester in October 2013, followed by an Early Day Motion in the House of Commons tabled by Andrew Love MP.

“There is no doubt that 2014 is going to be one of the biggest years in the Fellowship’s long history,” says Ted. “The distribution of seeds will be a major part of our promotional calendar and will allow our messages on the late effects of Polio and PPS to literally blossom, not just among members but also the wider public.”

Thanks to our Brunel University intern, Andrew Billingham, for introducing this valuable connection with Westland for us during his time on placement at The British Polio Fellowship.

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Merchandise

A series of commemorative merchandise has been ordered to promote The Fellowship at planned events during our 75th Anniversary. See pages 18-19 for details.

Calendar

Later in the year we are planning to launch a 2015 wall calendar, as a visual retrospective of our 75th Anniversary Year in 2014. Further information on how to contribute will be in the next bulletin.

British Polio Month, July

July will once again be designated British Polio Month. What events, fundraisers and activities are planned in your area? Let us know as soon as possible, and we will offer what publicity and promotional support we can.

Team Splash

We are also looking to capitalise on last year’s amazing Team Splash event organised by Julia

Roberts, QVC, and Leukaemia Research. This year, we are going to support the event nationally through the regions, with publicity materials that can be downloaded from our website. Hence if you have any local schools, swimming groups etc who you think would be interested in organising their own Team Splash 2014 as a British Polio fundraiser, please get in touch and we will make sure you have all the details as soon as they are available.

Sporting links

Capitalising on our awareness-raising success with Crystal Palace Football Club last season, we are in talks with Birmingham City FC. We have tangible connections through its former player Jeff Hall who died of Polio 55 years ago and the club has also held a fundraising dinner for us. We are also hoping to work with Rotherham United Football Club following an approach from a member who has good contacts at the all-new New York stadium.

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Indoor Dance Championships, 9 October, The Royal Albert Hall

To recognise that this is a really special year for The Fellowship, we have incredibly been able to secure the Royal Box, to thank our Ambassadors and Patrons for their support.

PPS Day, 28 October

We will launch this special day with a Parliamentary Reception at Portcullis House, where we are hoping to raise awareness with as many MPs as possible about the late effects of Polio and PPS. Look out for more on this in the summer.

Park Row Five Jazz band CD in aid of The British Polio Fellowship

The Park Row Five, featured in the pages of this bulletin for their excellent pre-Christmas concert in the South West (pictured above),

are keen to produce a fundraising CD for us. We are containing our natural excitement on this one while we work through the ‘devil in the detail’, such as music copyright issues etc. This opportunity has come about through Professor Gareth Williams, who as well as being an Ambassador for us, an author, doctor and academic, had a mis-spent youth, which led him to take up the flute and sax. We are aiming to get the CD out by the autumn so we can capitalise on the Christmas retail rush. The band plays a wide range of jazz, from Gershwin and Ellington to Latin, so there should be something in there for you all.

We’ll try to upload some preview clips to our website in advance of the main CD launch later in the year, to give you a chance to decide whether you want to part with your cash, either to treat yourself or as a Christmas present.

More events planned

Further events and activities will be announced in due course. What are you doing in the Regions to commemorate our 75th Anniversary?

Let us know and we may report your events within the bulletin and possibly even further afield. n

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news from

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As part of our 75th Anniversary celebrations this year, we want to hear about your

birthdays too, especially if you are turning 75 or even the magic 100 during 2014! We can’t promise to print all photos, however, we are very keen to do so if space allows. So please email us or post a copy of your birthday photos (75th and 100 birthday photos are especially welcome).

We will be regularly reporting on who has passed the milestones of 75 and 100 in the pages of the bulletin this year. Who knows, you may even feature in the 75th Anniversary retrospective calendar that we are planning to launch later in the year for use in 2015.

One such member who is celebrating with us this year is Kathleen Daisy Bunn of Hemel Hempstead. The bulletin caught up with her to hear her thoughts on passing the incredible milestone of 100 years young, Polio, and The Fellowship.

As Kathleen celebrates her birthday surrounded by family, flowers and cards for the 100th time, the centenarian is supporting us as the charity celebrates its own 75th birthday, and looks back on her earliest memories of being nursed at home while fighting Polio. Born 18 January 1914 in Wandsworth, London, Kathleen contracted Polio aged four and a half. Despite being extremely ill and also fighting double pneumonia, she was cared for at home with a day nurse and night nurse looking after her around the clock.

“One of my earliest memories was when I was recovering at home in bed. It was Armistice Day and my parents had draped a Union Jack over the bottom of my bed.” says Kathleen. “I feel fortunate that in the long term, it was just my right arm that was left affected and weak. At that time you were made to write with your right hand and my

Send us your 2014 birthday party pictures

doctor said that would have helped me to keep my strength in that arm.”

Now experiencing Post Polio Syndrome (PPS), it’s only in the last five years that Kathleen has really struggled with weakening in her right hand, and has had to give up her hobby, sewing. “I do suffer with the cold due to PPS and this makes my hand much weaker. I’m just about able to write a birthday card first thing in the morning when my arm has been rested and warm from bed,” adds Kathleen.

Kathleen celebrated her 100th birthday at home in Hemel Hempstead, where she now lives to be near to her daughter, grandchildren and three great-grandchildren. “I had such a wonderful day with all my family coming to visit me on my birthday,” continues Kathleen. “We had champagne, my granddaughter baked me a beautiful cake and of course

I received my card from The Queen. I was sent so many beautiful flowers, too.”

Fellowship CEO Ted Hill says: “Kathleen has been a member of The British Polio Fellowship for many years now and on behalf of all us who work for the charity and all of our members I would like to congratulate her on a very special birthday. Kathleen is part of a community of some 120,000 plus people across the UK who are living with PPS, yet few people understand the condition, even within the medical profession. With an average diagnosis period of around six years, PPS ought to be spotted much earlier and that would help sufferers massively in terms of them being able to manage their lives more effectively.”

If you have birthday photos or memoirs that you are happy for us to use, you can email these to [email protected] , post copies to us at Central Office, or if you are unsure how to get the photos to us, call us on 0800 018 0586. n


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We would like to thank

everyone for attending the preview of the film The Journey at the MediCinema at St Thomas’ Hospital in London on 30 January. It was great for us to see everyone there and it was obvious at the reception afterwards that friendships old and new were flourishing.

At present, the film is undergoing further editing and once finished is planned to be used as a resource on the website, with all announcements in the bulletin.

Thank you to all who took part in the film and made it an historical snapshot of where the Polio community and The Fellowship are today, in this important year in our history.

Without further ado, there follows a photo montage of the event, courtesy of George Archer, our trusty photographer for the evening. Digital copies of photos are available from Central Office by email or on disk, for anyone who sees themselves (or was there on the night and can’t see themselves in these pages)… n

Top: Colin Crook; middle left: Zarina Hudda, Dr Robin Luff, Sandy Yarrow; middle right: Gordon Lumb and Aidan Linton-Smith; bottom: Ilana Richardson and Ted Hill.

The Journey film preview


news from

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From left to right: top row: Central Office Staff; L/R Joe Fisher, Gordon Lumb, Bridget Flint, Aidan Linton-Smith, Pam Jones; second row: Pam Jones; Zarina Hudda; Fisher Family; third row: Anne Wafula-Strike and Aidan Linton-Smith; Joe Fisher; left: Christine Lumb; below: David Mitchell and Sophie Grant; Rhona Benford, Joyce Jenkins , Nali Patel; Dr Robin Luff and Sue Woodward.


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The Early Day Motion (EDM) tabled by Edmonton MP Andy Love has gathered further momentum since the last edition of

the bulletin, with over 50 MPs now having signed the motion. This is no mean feat as many EDMs attract no more than a few signatures. The EDM is still an important part of raising our profile in parliamentary circles, and we are hoping to capitalise on this when we have a parliamentary reception on 28 October in Portcullis House, as the focal point of our 75th Anniversary Year PPS Day commemorations.

The EDM is still ‘live’ until the end of this particular parliamentary session, and it is therefore well worth contacting your MP if you have not done so already, to ask them to support the motion. The EDM is number 573 and can be found online at: www.parliament.uk/edm/2013-14/573

If you do not use the internet and want to find out more, or if you want to know how to contact your local MP, please call Central Office and we will be pleased to help.

One such member who saw our appeal regarding the EDM in the last edition of the bulletin is Malcolm Wallace from Wombwell in Barnsley. Here is Malcolm’s story…

Malcolm takes up PPS education challenge with local MP

Malcolm Wallace was born in 1934 in Wombwell, Barnsley, South Yorkshire, and by the tender age of two years old he had contracted Polio. While Malcolm has struggled with many of the late

Early Day Motion campaigngathers momentum

effects of Polio as he has become older (he’s now 79), he now believes some of the health problems he has had since the late 1990s are attributable to Post Polio Syndrome (PPS). He lobbied his MP, Michael Dugher of Barnsley (East), to support the EDM tabled in the House on behalf of The Fellowship.

Despite requiring a calliper from such a young age, Malcolm, like so many people with Polio, managed to live as normal a life as possible,

overcoming the odds and having a long career as an office worker. However, his condition has deteriorated in later life and he is convinced that PPS is the cause. Malcolm is now supporting The British Polio Fellowship in raising awareness of PPS and Polio in the UK, and urges others to lobby their MPs, too.

EDM 573 (www.parliament.uk/edm/2013-14/573) “records with appreciation the 75th anniversary of the

establishment of The British Polio Fellowship”.The EDM goes on to “wish the organisation every success in its efforts to inform healthcare professionals in order to improve the quality of life for an estimated 120,000 people living in the UK today with PPS, and calls on the Department of Health to bring forward a strategy to address the needs of those suffering from PPS and to publicise those needs within the medical profession”.

“I read about PPS in the bulletin, saw the call to arms asking people to inform their MPs, and I decided to contact my local MP Michael Dugher,” says Malcolm. “I was impressed by his response and he has taken a real interest, not only signing

“I read about PPS in The Bulletin, saw the call to arms asking people to inform their MPs, and I decided to contact my

local MP. I was impressed by his response and he

has taken a real interest.


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Above: Malcolm Wallace who contacted his MP. Below: Andy Love MP tabled the Early Day Motion.

the EDM but helping generate an article in the local newspaper to raise awareness of the plight of those living with PPS.”

“I do suffer much more with the cold now than I did before; this is apparently a classic symptom of PPS and The Fellowship has been really helpful in providing guidance and information on pacing in particular, that have helped me cope better with PPS and alleviated the symptoms. I finally got a diagnosis and now I feel better able to cope with it in the knowledge it isn’t simply old age.”

Fellowship CEO Ted Hill says: “Malcolm is part of a community for some 120,000 plus people across the UK who are living with PPS, yet few people understand the condition, even within the medical profession. With an average diagnosis period of around six years, PPS ought to be spotted much

earlier and that would help people massively in terms of them being able to manage their lives more effectively.

“Parkinson’s has instant recall with the public; everyone knows what it is. Yet around the same number of people are suffering with the debilitating neurological condition of PPS, and little is known about it. That is our ‘education challenge’ and we thank Malcolm and his local MP Michael Dugher for helping raise the profile of this important issue, as well as Andy Love MP for tabling the

EDM originally.”

Thanks to Malcolm, Andy Love MP, and all who have supported us so far with the EDM. Call us at Central Office on 0800 018 0586, or email [email protected] to see how you can help. n


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Following the efforts of jazz ensemble

the Park Row Five at St Mary’s Centre, Thornbury, South Gloucestershire, on 21 December, the fundraisers for The British Polio Fellowship collected over £160, with all proceeds going to the charity’s Winter Warmth Appeal that helps people struggling to heat their homes.

Led by British Polio Fellowship Ambassador Professor Gareth Williams, who agreed to front this year’s Appeal, the Park Row Five entertained shoppers on the last Saturday before Christmas with two hours of traditional and contemporary music. Members had collection buckets for people wishing to make donations, as well as information on the Winter Warmth Appeal and the Fellowship’s work in general as it marks its 75 years of supporting people with Polio in 2014.

“On behalf of the Park Row Five, I would like to thank the people of Thornbury for their generosity and support on the day,” says

Professor Gareth Williams. “Christmas is a time when money is tight for everyone, but the Winter Warmth Appeal is a great charitable cause helping those living with Polio and Post Polio Syndrome (PPS).”

People suffering with Polio or PPS feel the cold more than most and all the money raised helps The Fellowship to reach its £20,000 target to support qualifying members with the ever-rising cost of heating bills.

“As fuel bills continue to rise, the amount The Fellowship needs to fundraise to support people forced to choose between heating and eating grows correspondingly,” explained Professor Williams. “Given the success of this event, we are looking at doing another fundraiser for the charity a little later this year.”

“The music went down really well and we received a very warm welcome from shoppers in Thornbury,” says Linda Davis of The British Polio Fellowship. “It all made for a very Christmassy atmosphere for shoppers and we want them to

Park Row Five jazz upwinter warmth fundraising


news from

central office

The word ‘hero’ and ’courage’ are bandied about so much these days

that their value is often lost. A recent, very personal, and very loving tribute to a person with Polio came out of the blue at the new and magnificent stadium of Rotherham United Football Club (The Millens).

Last December, the club joined with Graham Moore, Chairman of Westfield Health, to sponsor all the superb disabled viewing areas in honour of a Millens legend, the late Derek Dalton.

Derek caught Polio in 1950 at the age of two. He was loved and supported by his fantastic family, and his passion was football. His knowledge was unbelieveable and he was voted Shoot magazine Fan of the Year in 1983. He met The Queen, Bobby Robson, Jimmy Greaves, the great Pele, and Bobby Charlton introduced Derek to Portugal football legend Eusebio.

But it was Derek’s smile, his laughter and joie de vivre that made him loved and recognised by football supporters nationwide. You could meet Derek on dark and rainy nights from Rochdale to Plymouth, being pushed about in a variety of ‘chariots’. He never complained, was always happy, always urging on ‘The Millens’. A true hero and a sad loss at the age of 45.

David Mitchell, Lincolnshire Chairman and long-time Rotherham supporter

Memory of football superfan lives on

know that their donations are going to make a very real difference to people feeling the cold this winter.”

A professor at the University of Bristol, Gareth became an Ambassador for The British Polio Fellowship while writing his book, Paralysed with Fear – The Story of Polio, and kindly volunteered to use his knowledge and musical talent to front the Winter Warmth Appeal on our behalf.

“People have been hit more by floods than cold this winter but when the cold bites, we will be able to offer real help to those in most need, thanks to the kindness of Thornbury people,” says Fellowship CEO Ted Hill. “We are so grateful for Gareth and The Park Row Five’s ongoing

support and can’t wait to see what they have planned for us later in the year.”

The Winter Warmth Appeal is about more than just money. In addition to delivering financial support with heating grants for qualifying members, the campaign also aims to provide practical advice to people on how to keep the ever-rising cost of utility bills down.

It is still not too late to donate and there are many ways to do so. You can send a cheque to Central Office, make a regular donation via direct debit, or of course you can make a donation by credit card. Simply call 0800 018 0586 and the Central Office team will be happy to help. Alternatively, visit our website at www.britishpolio.org.uk and click ‘donate.’ n


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Commemorate 75 years with Fellowship products

To mark our 75th Anniversary, we have produced some useful items for our members to purchase at a decent price. Don’t forget that you can encourage other family members and/or friends to purchase an item to help with our fundraising and to get our name out there.

Don’t forget

This magnetic fridge notepad can be used to write down shopping lists or things you need to remember and is also a reminder of how to get in touch with The Fellowship.

Manage your medication

This compact pillbox can help you to manage your medication and is helpful if you need to take medication while on the move. The built-in pill-cutter is especially useful for large pills that are difficult to swallow.

Pace yourself

When living with the late effects of Polio and PPS, pacing is essential, whatever your level of mobility. This simple pedometer will allow you to keep track of the number of steps you are taking in any one day and help you to pace yourself.

Keep it light

This very compact and lightweight reusable shopping bag in its zip pouch fits any handbag or jacket pocket. It is useful for small shops or when purchasing bits and bobs on the go.


fellowship m

erchandise

Order formPlease send me the following:

Product Price each Quantity Cost

Pillbox with Cutter £3.50

Pedometer £2.99

Reusable Shopping Bag and Pouch £1.99

Magnetic Fridge Notepad £1.90

Delivery address ___________________________________________________________________

_________________________________________________________________________________

_________________________________________________________________________________

Postcode _________________________________________________________________________

Email ____________________________________________________________________________

Telephone ________________________________________________________________________

How to pay

I wish to pay by cheque and enclose a cheque made payable to The British Polio Fellowship

I wish to pay by credit card

Name on card ____________________________________________________________________

Card number

Start date

Expiry date

Alternatively, you can ring your order through to Freephone 0800 018 0586.


The 75th Anniversary Year of The British Polio Fellowship has got off to a winning

start, as two of our members are celebrating recognition in The Queen’s New Year Honours List.

Michael Griffiths, 57, of Southport, Merseyside, has been awarded the British Empire Medal (BEM) while Malcolm Kielty, 63, of Lightcliffe in Halifax was made a Member of the British Empire (MBE). Both Michael and Malcolm are two of several unsung heroes to feature in the New Year Honours List for charitable service to their communities.

“It’s great news that Michael and Malcolm have been honoured in this way. Both rewards are richly deserved for two men who have given so much not just to charity but to the wider communities in which they live,” says Fellowship CEO Ted Hill.“Both have made an immeasurable contribution by volunteering for years and through their great work with young people.”

Malcolm contracted Polio when he was 16 and, given that rugby ran in his family (his dad Stan is in Halifax Rugby League Club’s hall of fame, having played more than 480 games), dedicated much of his life to Wheelchair Rugby League. He was instrumental in bringing the sport to the UK and introducing thousands of disabled people to sport as a consequence.

On the other side of the country, Michael has been involved with the North West Branch of The Fellowship for over 12 years and been Chair for the past five years. During this time he has highlighted not just the charity, but

the needs of members living with Polio and Post Polio Syndrome (PPS), being proactive in raising members’ concerns over the introduction of Personal Independence Payment with MPs and ministers. He was honoured specifically for his services on The Fellowship’s behalf.

“I am really honoured and very pleased to get the BEM,” says Michael. “I am particularly glad because the BEM is the working man’s medal. It is great too, because it brings recognition to The British Polio Fellowship, giving the charity more publicity.”

“When I got the letter I was pretty stunned, but I am delighted,” says

Malcolm. “These awards don’t happen in isolation and many people will share my aspirations. Wheelchair Rugby League is still in its infancy; now it is a matter of helping it to grow. I come from a family with a rugby league background and we don’t get carried away. There’s plenty to keep my wheels firmly on the ground.”

The New Year Honours List recognises the achievements and service of extraordinary people like Michael and Malcolm from across the United Kingdom and while stars and celebrities feature, 74% of this year’s recipients are people who have undertaken and continue to undertake outstanding work in their communities.

“2014 is now set to be the biggest year in our long history and our members being honoured in this way is a welcome start to a year of remembrance and celebration,” adds Ted. “Many of our members up and down the country do amazing work and it is very welcome to see this being formally recognised.” n

Members awardedNew Year Honours

The MBE medal.

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fundraising news

Give as you LiveAs The British Polio Fellowship is registered with Everyclick, when you do your online shopping at selected stores, around 3-4% of the cost of your total shop will be donated to The Fellowship. In some cases this could be more as the amount is dependent on the discount that has been agreed with the supplier.

There are over 3,000 stores participating in this scheme, such as John Lewis, Waitrose, M & S, Amazon, Debenhams and many, many more.

All you have to do is visit the website www.giveasyoulive.com and start shopping. But don’t forget to nominate The British Polio Fellowship as your preferred charity.

Giving by text is just so easyDon’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.

To: 70070

It’s as simple as that! The amount you have donated will then be charged to your mobile phone account.

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Donations from trusts and foundationsWe would like to thank the following trusts for recently supporting the work of The Fellowship; their generosity is so greatly appreciated:

Miss Hendry’s Charitable TrustHuggard Charitable TrustCharles Littlewood Hill Trust

A N McKechnie FoundationRest Harrow TrustRind FoundationNancy Roberts Charitable TrustArthur and Audrey Silkin Charitable TrustSlater Trust LimitedSouter Charitable TrustMarjorie Viggars Charitable Trust

In memoryWe would like to offer our sincere condolences to the families and friends of the following people:

Mrs Kathleen Ashley Non Member Penarth

Mr Harold Bullard Non Member Herefordshire

Mr Alan Raymond Doyle Member Ruislip

Mrs Audrey Betty Foster Member Essex

Mrs Kathleen Gibson Member Devon

Mr Alan Gray Member Wiltshire

Mr Leonard Greenwood Non Member Wolverhampton

Miss Norah Harding Member Swansea

Mrs Sandra Knight Member Somerset

Mrs Marie Leppard Member Staffordshire

Miss Peggy McCarthy Member Wales

Mr John Parsons Member Peterborough

Miss Patricia Eileen Radley Member Kent

Mrs Doreen Rivers Member Devon

Mr George Sloss Member Stoke on Trent

Mr Colin & Mrs Norma Smith Friends of Member Aylesbury

Miss Kathleen Spencer Member Yorkshire

Mrs Evelyn Walker Member Lincolnshire

Mr Edward Wilson Member Lancashire

Mr Dennis William Wyatt Member Cambridgeshire

Thank you to everyone who has made a contribution in their memory.

If you would like to make a donation in memory of a loved one, please contact Linda on 0208 836 3689 or email [email protected]


support services

Contact us on: 0800 018 0586 FREEPHONE Email: [email protected]

The Support Services team provides information, advice and support to people living with the late effects of Polio and Post Polio Syndrome (PPS), co-ordinates the welfare grants schemes for members and supports the welfare volunteer network.

The Government has recently introduced some changes to the process by which claimants of certain benefits can dispute

the result of their claim. The new process applies to claimants whose benefit decision is dated on or after 28 Oct 2013. All the benefits paid by the Department for Work and Pensions (DWP) are affected, including Income Support, Incapacity Benefit, Employment and Support Allowance (ESA), Jobseeker’s Allowance, Disability Living Allowance, Attendance Allowance, Personal Independence Payment (reformed from April 2013), Universal Credit (reformed from April 2013), Carer’s Allowance, Pension Credit and the State Pension. Working Tax Credit and Child Tax Credit may be moved to this new system in due course.

The major difference between the old disputes system and the new one is that you now have to ask for what is known as a ‘Mandatory Reconsideration’ before you can appeal the disputed decision. This means that another decision-maker at the DWP will have a look at the original decision and give you a new one. If you still disagree with their new decision you can then appeal to the Courts and Tribunals Service. Previously it was possible to appeal straight away, without asking for a

reconsideration. The Government’s stated aim is to try to resolve the disputed decision earlier in the process, before it gets to the appeal stage. You need to be aware that the mandatory reconsideration and/or appeal process looks at the whole decision again, even any components you have already been awarded, so it is recommended that you seek advice before disputing a decision in these circumstances.

Minor changes

Most claimants who want to dispute a benefit decision will only notice relatively minor changes with the new system. If you have been awarded any rate of benefit, this will continue to be paid during the dispute process. However, those claiming ESA may be disadvantaged by the new system. Previously, those who failed to get an award of ESA would be paid a basic ‘Assessment Rate’ while they disputed the decision. Under the new system if a claimant fails to get any award of ESA they won’t be paid anything, so may have to claim Jobseeker’s Allowance until the mandatory reconsideration process has been completed. In these circumstances the Government states it will waive some of the requirements for claiming Jobseeker’s Allowance. If the claimant then

Benefit appeals processreforms

Support Services

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appeals, they can either stop the Jobseeker’s Allowance and claim the ESA assessment rate once the appeal has been lodged, or continue on Jobseeker’s Allowance (they are both paid at the same rate).

To start a mandatory reconsideration process, you have to phone, write to or visit a DWP office in person and give brief reasons why you dispute the decision. This needs to be done within a month of the decision date. The contact details will be in the decision letter.

You can also ask for a ‘Statement of Reasons’ for the original decision – this will give you an extra two weeks from the date the statement of reasons is provided to register your mandatory reconsideration so that you have a chance to read and comment on the reasons for the decision. Once you request the mandatory reconsideration, a decision-maker from the DWP will try to phone you to explain the decision and ask if you have any further

evidence to supply. If you obtain further evidence the DWP will delay the reconsideration for a month to give you time to send it.

However, if you don’t want to delay the reconsideration process further, especially if you have to claim Jobseeker’s Allowance, you may prefer to ask the DWP to reconsider the decision without further evidence and then send this extra evidence in with your appeal if necessary.

Appeal in writing

If you don’t agree with the new decision and wish to appeal to the Courts and Tribunals Service, you need to appeal in writing within one month of this decision and include your mandatory reconsideration notice (you will receive two copies). It’s best to use the appeal form SSCS1, which you can download and print from www.gov.uk. Don’t forget to seek advice, and copy the appeal form before you post it.

The Department for Work and Pensions has extended the areas in which Disability Living Allowance (DLA) claimants will be reassessed for Personal Independence Payment (PIP) rather than a renewal of their DLA.

This only applies to claimants whose DLA has a fixed award period and is due to expire on or after 17 March 2014, those who wish to report a change in their care or mobility needs, and children turning 16.

From 28 October 2013 the postcode areas covered by the reassessment began with SA, LL, SY, LD, CF, NP, HR, TF, WV, DY, WR, B,WS, ST, DE, CV, LE, NG, NN, LN, PE, IP and NR, covering areas in Wales, the Midlands and East Anglia.

From 13 January 2014 the postcode areas were extended to DG, ML, EH and TD, covering areas in Southern Scotland and the Borders.

From 2 February 2014 the postcode areas were further extended to LA, CA, HG and YO, covering areas in Northern England. Further areas will be added during 2014.

At the moment DLA claimants living outside these postcode areas can still report a change of care or mobility needs and be reassessed for DLA rather than PIP for a limited period.

Those claimants who have an indefinite or ‘lifetime’ award of DLA will be reassessed for PIP starting from October 2015. The reassessment process is due to continue up to October 2017.

PIP reassessment extended to new areas of UK

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support services

Government

The deadline for Winter Fuel Payment applications for winter 2013/2014 is 31 March 2014.

For 2013/14, this payment will apply to people who were born on or before 5 January 1952 who normally live in the UK throughout the week of 16 to 22 September.

Those eligible could receive between £100 and £300 tax-free. Most people should have received their money before Christmas 2013, but if someone qualifies but does not get paid automatically, they will need to make a claim.

The Winter Fuel Payment does not affect other benefits.

Those eligible for the Payment can also claim for past winters: 1997 to 1998, 1998 to 1999 and

1999 to 2000.

Claims cannot be backdated for winters after 2000. The application deadline for backdated claims is also 31 March 2014.

To find out more and check if you are eligible visit: www.gov.uk/winter-fuel-payment/overview

If the temperatures drops this winter, people claiming certain benefits could also get a Cold

Weather Payment of £25. Payments will be made if the local temperature is either recorded as, or forecast to be, an average of zero degrees Celsius or below over seven consecutive days between 1 November 2013 and 31 March 2014.

To find out more and check your eligibility visit: www.gov.uk/cold-weather-payment/overview

(Source: Department for Work and Pensions)

winter fuel payment

benefit fraudNew powers to combat

New regulations to help with the prevention and detection of benefit fraud have been introduced.

Under the Social Security (Persons Required to Provide Information) Regulations 2013, authorised Department for Work and Pensions (DWP) officers will now be able to ask for evidence from landlords, rent officers, childcare providers and local authorities when investigating benefit claims. They will only be

permitted to gather this information when investigating a claim.

People will be asked to provide written information by letter or during a visit by an authorised officer.

These changes have been introduced mainly to take account of the childcare and housing costs elements of Universal Credit and will apply to the whole of Great Britain.

(Source: Department for Work and Pensions)


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A member has contacted The Fellowship after being conned by a builder, who claimed he had been appointed to advise disabled people as to their specific needs.

Should any tradesman, such as a builder or plumber, claim to be an expert on giving advice to disabled people, do ask to see examples of the work they have done before you decide to go

ahead. Trust your instincts if you have any doubts or feel uneasy about someone and remember that websites can appear very seductive and that references can be falsified.

For further information and advice, visit the Trading Standards Institute website at www.tradingstandards.gov.uk/index.cfm

A warning to

neuropathic painNew guidance on

members

The National Institute for Health and Care Excellence (NICE) has issued new guidance for treating neuropathic pain.

Neuropathic pain or ‘nerve pain’ occurs when our nerves don’t work properly and send the wrong signals to the brain. People with neuropathic pain describe it as sensations of shooting, stabbing, an electric shock, burning, tingling, tightness, numbness, prickling, itching or pins and needles. The pain can come and go or be there all the time.

Neuropathic pain can be caused by conditions such as shingles, diabetes, cancer and multiple sclerosis. It can also occur in people with Post Polio Syndrome (PPS).

NICE has produced guidance on the medications that can help ease neuropathic pain. This includes information for the public, which can be accessed at: http://publications.nice.org.uk/drug-treatments-for-neuropathic-pain-ifp173

For a copy of our factsheet, Pain and how to manage it, contact Support Services.

(Source: Pain UK)


support services

Benefit and pension rates 2014/15

The Department for Work and Pensions has published the proposed benefit and pension rates for 2014-2015. Most increases will take place in the first full week of the tax year, which will be the week beginning 7 April 2014. The weekly benefit rates from April 2014 will be the following:

Income Support and Income based Jobseeker’s Allowance

Single person £72.40

Couple £113.70

Employment and Support Allowance (Income-related and Contributions-based)

Assessment phase:

Single person £72.40

Couple (Income-related only) £113.70

Main Phase Components:

Work-related activity group £28.75

Support group £35.75

Incapacity benefit (existing claimants only)

Long term rate £104.10

Pension Credit

Standard minimum guarantee

Single £148.35

Couple £226.50

NOTE: Additional amounts may be paid in respect of the benefits above if you qualify for disability and/or carer’s

premiums and/or have specific housing costs. Extra Pension Credit may also be awarded if you are aged 65 or over and

your income is greater than a basic amount.

Attendance Allowance

Higher rate £81.30

Lower rate £54.45

Carer’s Allowance £61.35

Disability Living Allowance

Care component:

Highest £81.30

Middle £54.45

Lowest £21.55

Mobility component

Higher £56.75

Lower £21.55

Personal Independence Payment

Daily living component

Enhanced £81.30

Standard £54.45

Mobility component

Enhanced £56.75

Standard £21.55

If you would like a full benefits check and/or assistance with completing Disability Living Allowance, Attendance Allowance, Personal Independence Payment or Employment and Support Allowance claim forms or advice on any other benefit, please contact Support Services on 0800 018 0568. We can book an appointment for you with our Disability Benefits Advisor.


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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 Don Charman explains how The Fellowship has helped him and how important it is that people know about the late effects of Polio and Post Polio Syndrome (PPS).

Glad to play my part in raising

Having read the latest copy of the bulletin, and in particular the item about MP Andy Love, I confirm that I have written to my MP Julian Smith, urging his support.

Also I confirm that I contracted Polio in 1945 when serving in the army in India. Fortunately, my mobility was not affected as the area concerned was my left shoulder girdle and (most annoyingly) my right thumb. I have done my best to ignore the disability and have led a fairly normal life but some 15 years ago, in my early 70s, I realised that I was suffering from more than ageing as I could not lift a slice of bread to my mouth with my left arm. I had never heard of Post Polio Syndrome (PPS) nor of The Fellowship! But my wife happened to

see a reference to PPS in a magazine and as a result I contacted The Fellowship, who put me in touch with a neurologist. After many tests he confirmed that I was indeed suffering from PPS. Armed with this information I contacted the British Legion who acted on my behalf and I received an increase in my disability pension, which has proved to be most welcome.

At least I know what the reason is, but it is, of course, still worsening. However, apart from that I am in pretty good health and still cope with a half-acre garden despite my 87 years.

Thanks for your help and may the publicity bring about far more awareness of the late effects of Polio and PPS.

Don Charman

My sister and I are the only people in our Group who have known Win Fraser Smith since the Ruislip and Northwood Branch was formed in the 1950s. Win was married to Len and they had two young sons, Trevor and Andrew.

Win has been an active member of the Branch and enjoyed having bring and buy sales and stalls at bazaars. She did her share of flag selling and held committee meetings in her home.

Her real passion was flower arranging. When we had Christmas parties etc you could be sure the tables would be nicely decorated.

Win learned to drive so she could be independent in her late 50s or early 60s. She also

enjoyed singing and would sometimes entertain us with a song or two!

Sadly, her husband Len and eldest son Trevor have passed away. But Win still lives in her own home, with help from carers and her very good friend Katie who lives next door. Her youngest son Andrew lives with his family in Marjorca.

Win is 91 years young, and has been our Chairman for the last 17 years. She is now having to retire because our Branch has closed and we are now a Group. On behalf of us all, thank you so much for all your hard work Win!

Audrey Buckingham

awareness

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We want to hear your news. Please tell us

what events you have organised.

Copy dates for the bulletin are:

May/June – 15 AprilJuly/August – 9 June

September/October – 13 August

November/December – 15 October

Send your reports to the address on page 2.


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.

Our charity partners

Having a spring clean?Do you have an old phone that you can

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.

If you would like a recycling bag please

phone 0208 836 3679 or log on to the

following website and register to receive

your bags direct.

www.recycle4charity.co.uk

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grab yourself a bargain and help The

Fellowship at the same time.

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Preparations for our social events are well under way for the coming year. Ten flag days have been arranged and speakers for our Get togethers are booked (the first in January was “Bobbies on the beat”– Experiences of a retired Metropolitan Police Officer – quite amusing).

A holiday for 18 members to Ross on Wye in April is highly recommended and we are also planning various outings.

Unfortunately, like so many other Branches, our current transport facility is now under threat, so any ideas for reasonably priced transport for four or five wheelchairs in the Worthing area would be gratefully received!

Our Welfare Committee is fully committed to keeping in touch with members by phone or visits and we are continuing with our most extensive welfare grants, focusing on members who are experiencing illness or sad times.

Financially, we might just about break even this year, mainly due to some excellent fundraising events by branch members but, also sadly, due to a legacy and other donations in lieu of flowers.

The South of England Region consists of eight Branches and Groups – Berkshire, Dorset, East Kent

(Ashford), North West Kent, South East Kent Group, Southampton, Sutton and Worthing and Sussex.

Currently Bob Stephens (Worthing) is Chairman, Mary Gillies (Worthing) is Secretary and Madeleine

Henry (Southampton) is Treasurer. Each Branch sends along representatives to share ideas and

thoughts at two meetings per year. Discussion on joint events – the Regional Lunch and Regional

Games – takes place and we are especially keen to hear about each other’s trips and outings, as this

gives us venue ideas for our own Branches.

Games Co-ordinator Mary Gillies has put together a team of competitors to represent the Region at

the National Indoor Games, held in Leicester in March.

Anyone interested in learning more about the Region 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.

South of England Region

The first social of the new year saw us return to the Phoenix Centre in Reading for a hot tea. Members were able to access hand, neck and shoulder and foot massages, which had proved very popular at a previous event. There was also an opportunity for hairdressing and manicures, so everyone went home looking very glamorous!

Our February get together was lunch at a country pub, The Cunning Man, in Burghfield, with our AGM being held on 29 March at The Calcot, along with another lunch, naturally!

Berkshire Branch

About the Region

Worthing & Sussex Branch


branch & regional new

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Our Christmas Lunch was at the Connaught Hotel in January and our thanks go to Rose for arranging this. It was lovely to see familiar faces and have the chance to catch up with those who have been unable to attend our monthly socials.

At our monthly social on Sunday 9 February,our speaker, Ron Emmitt, talked to us about ‘Eliminating Polio in India’.

The venue for our Birthday Lunch in April has yet to be decided.

With increasing postal costs, we are looking to distribute our newsletter via email wherever possible.

We look forward to seeing you all at our socials and the other events we have planned for this year. Keep well, warm and dry.

Dorset Branch

We held the first Christmas lunch for our group at Table Table in Dover in December and it was very well attended. We were pleased to meet new members and also to enjoy a choir of school children singing Christmas carols.

In January we met up again for afternoon tea at The Dover Marina Hotel and had a really enjoyable and fun time.

Our next social will be held just outside Dover at the Farthingloe Farm Restaurant on 27 March at 12.30pm. There is good disabled access, farm shops and various other attractions. Come along

and bring family and friends too. Ring the group leader to book for Farthingloe: 01233 732534 or email [email protected].

We have lots of activities planned for 2014; some you may need to book, but some you can just come along and enjoy. We look forward to meeting you.

• Angela Couling, Group Leader of the South East Kent Group has raised the sum of £500 towards Fellowship funds, which she received in a cheque from the Co-operative Group. Many thanks to the Co-op for its kindness.

South East Kent Group

Diary datesBerkshire Branch

29 March 12 noon at the Calcot Hotel. Lunch and AGM. Please note that the date has been moved from the 22 to 29 March as the first date clashes with the National Indoor Games.

June –date tbc. Cream Tea at Ambrose Allen Centre

July 12 – river trip from Windsor and lunch

Don’t forget we meet every third Thursday of the month, 2-4pm at Millennium Hall, Cliddesden. All welcome. For more information, ring Pat Galvin on 0118 981 3995.

Worthing & Sussex Branch

23 March – Get together, Durrington

5 April – Flag Day, Storrington

19 April –AGM and fish and chip supper, Durrington

16 May – Outing Mary Rose Museum, Portsmouth

31 May – Flag Day, Chichester

Yorkshire Region

11 May – Commonwealth Day – tasting sweets from the countries who have hosted the Commonwealth Games. Featherstone Community Centre, WF7 5BB. Noon to 6pm.

31 May – Air rifle shooting at the usual venue: WF11 9EF. Anyone wishing to attend please contact Jan Taylor: 07592 045536.


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Copy dates for the bulletin are: May/June – 15 April

July/August – 9 June

September/October – 13 August

November/December – 15 October

January/February 2015 – 30 Nov

Notts & Derbytrips out

The Branch has been busy in recent months. The committee arranged for a

four- night ‘Turkey and Tinsel’ stay at a hotel in Blackpool at the beginning of November. The 16 of us, plus the driver, were all excited about the itinerary. Unfortunately, on arrival it all changed as we were told that the turkey and tinsel was cancelled, as the other two bus tours were out all day so it was not viable to continue. We were taken aback, to say the least. Anyway, because of who we are, we made the best of it and made our own entertainment – a quiz, crackers and party poppers.

One day the driver took us to Preston or we used our bus passes on the tram to Fleetwood and Cleveleys. He also took us along the Golden Mile one evening to see the illuminations, which were beautiful. Michael and I went to the top of Blackpool Tower and were present in the ballroom when they were filming the trailer for Strictly Takes 2.

Just before Christmas, 22 of us went to Little Eaton Garden Centre for lunch. We had a great time and, of course, a lovely Christmas lunch. We all adored the roast parsnips. Marion arranged a raffle. Prior to the lunch Marion and myself made 100 Christmas cards for our members, which were posted out with our Christmas newsletter at the beginning of December.

In January 26 of us went to Nottingham Playhouse for the pantomime, Jack and the Beanstalk. Oh, yes we did!

Barbara Worrall, Chair, Notts and Derby Branch

Top: The group in Blackpool. Middle: Michael and Barbara the top of the Blackpool Tower. Above: lunch at Little Eaton Garden Centre.



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The Fellowship has played a

I have been a member of The Fellowship for 60 years and

my sister has been an associate member. Sadly, our Ruislip Branch has now closed due to so few members attending meetings so we are now a Group and I am its leader.

I contracted Polio at the age 17. I was working at that time in a department store in Uxbridge. On my day off, I went to see a friend who had two small children. Whilst there I felt hot and cold and not very well. The next two days I stayed home from work and was in bed with a fever.

We lived in a terraced cottage with only one tap (cold water), no electricity and an outside toilet. I lived with my parents and sister Margaret. Our brother was married and lived with his wife and 21-month old son, three doors away. My sister-in-law had a little book about children’s ailments from one to five years. She realised I might be suffering from Polio, so told my parents to get the doctor.

My right leg started to give way. The doctor came and examined me by gas light. He insisted I go to hospital. I went to Hillingdon Hospital and was put in a side room on my own for four weeks. I didn’t see any other patients in there with Polio. They made me a plaster of Paris splint to wear in bed, which had to be bandaged on as my leg was completely paralysed.

I was fitted with a calliper with no hinge at the knee, so consequently my knee began to get stiff without me realising.

One day the screens were put round me in the physio department and they turned me on to my front. One held me down while the other bent my knee. I will never forget that pain!

I was in hospital for three months but had to continue with the physio.

One day one of the physios asked me if I had heard of the Infantile Paralysis Fellowship. He said they organised outings etc. He contacted them and I received a letter from the Secretary of Harrow Branch. That’s how I heard about The Fellowship in June 1954.

I will always remember the first meeting I attended. It was a shock to see so many people with wheelchairs and crutches.

Being a member of The Fellowship really has given me a life, because goodness knows what I would be doing now if I hadn’t had all the friends I have made over the years!

Sadly, many have moved on or passed away, but I have many happy memories and photos.

Through The Fellowship I was introduced to swimming, which terrified me at first but eventually after much encouragement and persuasion I managed to do a length! I improved enough to take part in the Fellowship’s Galas. I also went to Old Time Dancing where there were disabled and able-bodied partners. I have taken part in Flag Days and been on holidays to Italy and Yugoslavia. I have also been to Christmas parties at the Guildhall in London where Vera Lynn cut the cakes.

I stayed many times at the Lantern Hotel in Worthing and for the last eight years have enjoyed holidays at the lovely bungalow at Burnham-on-Sea.

My best wishes to all members and friends.

Audrey Buckingham

key role in my life


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Essex and East Londonin with the new

During the past few weeks of dark days, wind and rain (which may have meant

that many of us have been unable or reluctant to venture out), the members of the Essex and East London Polio Group could look back to their annual Christmas Party, which was a fitting culmination to the year’s activities. On arrival, party-goers found a beautifully decorated hall and a buffet table groaning under the weight of an incredible selection of food.

Members had the opportunity to mingle and chat before Chairwoman, Sheila Diamond, officially welcomed everyone. In her speech Sheila said that the party was a celebration, not only of Christmas but of ourselves as survivors of Polio and Post Polio Syndrome (PPS); she concluded by urging us to “Eat, drink, and be merry” – an instruction that everyone subsequently did their best to follow.

As members applied themselves to the consumption of the Christmas fare, including an overflowing desserts trolley, background music was provided by the Redbridge Music Lounge Players. However, the latter came into their own when everyone was replete and the band turned the entertainment up a notch. These talented musicians sang and played through

a medley of songs and instrumentals from the 40s to the 80s, interspersed with Christmas favourites. Not only was everyone encouraged to join in, but we were also invited to shake our maracas (and our booty – whatever that might be!) and the dance floor became crowded with energetic and enthusiastic members who were happy to comply.

Sheer exhaustion was probably prevented by the timely arrival of Father Christmas, sporting a beard with a rather fetching perm. He was accompanied by a somewhat frisky Rudolf, whose rather strange appendages were the subject of much hilarity. Santa and Rudolf then proceeded to empty their capacious sacks as they toured the hall handing out gifts. Everyone agreed that the party was an extremely enjoyable close to 2013.



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The first meeting of 2014 also produced a capacity audience. Members heard a fascinating and informative talk from our guest speaker, a leading rehabilitation physiotherapist. The interactive nature of the talk meant that everyone was able to take part, ask questions and gain insight about the options that might be available to help improve their daily

lives. The group is now planning an equally interesting and enjoyable series of events for the rest of 2014.

If you, or anyone you know, would like to join us at any of our meetings you would be more than welcome. Just contact Glenda on 01375 671 816 or at [email protected]. She would be delighted to provide further information.

Scottish AGM Notice is hereby given that the 2014 Annual General Meeting of The British Polio Fellowship Scottish Region will be held at The Stirling Management Centre, Stirling University, Stirling FK9 4LA on Sunday 11 May at 11am.

Lincolnshire Branch updateWe are no different to most Branches with our

dwindling numbers, illness, travel problems and debilitating PPS. However, with the support of long-serving, stalwart members we carry on with 10 meetings/events each year. In the past two years, we have visited ‘The Deep’ in Hull, Yorkshire Wildlife Park, Skegness, and had a summer lunch and two Christmas lunches. Lincolnshire is a huge county (over 100 miles corner to corner) and travel is very difficult. Richard Tear in Grimsby is trying to revitalise the north of the county and Secretary Christine Joachim stewards the Grantham/southern area. Caroline Gordon-Wilson is joining the committee and everyone pitches in for refreshments, raffles etc.

Audrey Mason and Derrick Peart, both long-serving members, sadly died recently. The Branch was represented at their funerals.

We are looking forward to promoting our 75th Anniversary events and are holding a planning

meeting for local initiatives. As Chairman, I often worry that we are not more active and cannot attract more members, but then I am reminded that unlike many areas, we are still meeting and still alive!

I am sure that countless other Fellowship members hear the same as us: “We didn’t know any people with Polio were still about?” “What do you mean, Polio?” “That died out ages ago,” or “Don’t be silly, you cannot be suffering from Polio.” With increasing help from Central Office, we deserve to be acknowledged, recognised and cared for. Happy 2014.

David Mitchell, Branch ChairmanMembers and supporters are warmly invited to attend the Lincolnshire Branch AGM 2014 to be held on 12 March at 12 noon in the Hall at Branston Booths, LN4 IJF. Free parking. The agenda and full details will be sent out as normal. Put this date in your diary.

in with the new

In the November/December issue of the bulletin we featured Roy Birnie’s book, Oh no...Polio! However, the email address was incorrect. Roy’s address is [email protected]

Email correction


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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.

Rosalind Evans, Holiday Programme Co-ordinator Email: [email protected] Tel: 020 8836 3686

Applications received Review Panel meets

Between 1 March and 30 April May 2014

Between 1 May and 30 June July 2014

Between 1 July and 31 August September 2014

Between 1 Sept and 31 October November 2014

Between 1 Nov and 31 December January 2015

Between 1 January and 28 February 2015

March 2015

Between 1 March and 30 April 2015 May 2015

Grant applications

Burnham Bungalow

Here 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 June 2014, your application should reach us before the end of April in time to be considered at the May Panel meeting.

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.

Don’t forget that members looking for an affordable holiday in comfortable, well-adapted accommodation overlooking

the sea can enjoy a week at the Fellowship’s holiday bungalow in Burnham-on-Sea. There are spectacular views of the bay from the living room and two of the bedrooms.The bungalow offers well-adapted and modern accommodation and has the facilities to guarantee a good holiday at any time of year. The table shows the new weekly rates for the holiday bungalow. All bookings begin on a Saturday.

A deposit of £100 is required at the time of booking to secure the bungalow. To make a

booking please contact Rosalind Evans on 0208 836 3686 or email [email protected]

Dates for 2014 Price per week

29 Mar – 25 Apr 447

26 Apr – 23 May 513

24 May – 4 July 560

5 July – 26 Sept 585

27 Sept – 31 Oct 462

1 Nov – 12 Dec 329

13 Dec – 28 Dec 436

Book soon to avoid disappointment!


history corner

Towards the end of January this year, a number of Fellowship members, supporters and staff gathered at the

MediCinema at St. Thomas’ Hospital in London for a first viewing of Tony Klinger’s new film on The Fellowship. The film, entitled The Journey, shows how Polio has affected many people’s lives both in the past and today, often in new and different ways, by the onset of Post Polio Syndrome (PPS).

A number of Fellowship members and their families were featured in the film as each spoke

of their journey with Polio. It is particularly fitting that this new production had its premiere at the end of January 2014, for it was on 29 January that The Fellowship marked its 75th anniversary, having been founded by Patricia Carey and Frederic Morena on 29 January 1939.

The Journey is not the first time that The Fellowship has been depicted on the big screen. As well as numerous news and sports films, both amateur and professional, the Fellowship archive contains a number of 16mm copies of the film A Life to be Lived, which was made in the late 1950s.

The Fellowshipon film

By Barry North

Zarina Hudda at the preview of the 2014 film about Polio, The Journey.

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A Life to be Lived stars a young actor, Jack Hedley (who later found fame as the Senior British Officer in the TV series Colditz, as well as having roles in numerous TV and film productions), who plays the part of a young family man who has become disabled by Polio. Although Hedley was not disabled but was simply playing a wheelchair-user, the majority of the supporting ‘actors’ were members of The Fellowship with Polio, mainly from London. Hedley’s wife was played by Rona Anderson, who became a well-known film actress, as well as the wife of Gordon Jackson.

The film starts by recounting the difficulties that Hedley’s character experiences when he first comes home from hospital using a wheelchair – life was so difficult that he couldn’t even get his wheelchair through the front gate of his house! There then follows a brief series of disasters that Hedley relates in voice-over (with some delightful

+

Scenes from A Life To Be Lived, from top to bottom: Children arrive at the Fellowship branch meeting; Jack Hedley, Rona Anderson, the milkman, and his horse!; Problems getting the wheelchair through the gate; “A cheerful chap on crutches....”; Enjoying a Fellowship branch meeting; Job training organised through The Fellowship; Helping young people to swim; Fellowship members at the swimming pool (with Frederic Morena); Children at a branch Christmas Party; A skiffle group entertains at the branch children’s party; The final scene – a happy Polio family!

light jazz piano music!) and then he says: “And to cap it all off, a chap turned up on crutches; he was so cheerful that I could have crowned him. He was from the Infantile Paralysis Fellowship, the crowd who help people who have had Polio”.

This was the last thing he wanted but he listened to what the man from The Fellowship had to say and was persuaded, against much resistance, to attend a local branch meeting. He was dreading it, but when he arrived he found a positive, welcoming attitude and was soon converted to the idea that life in a wheelchair wasn’t, perhaps, quite so bad after all – if you go about it in the right way. And the people from The Fellowship showed Jack Hedley’s character the ‘right’ way to live with Polio. The Fellowship helped him to get some re-training for a new job, introduced him to swimming, and he soon joined in with the life of the local branch – with, of course, his wife and daughter who, each in their own way, were affected by this new disability.

While the film is carefully scripted and aims to show everyone the work of The Fellowship at that time, it does give us, looking back from


history corner

2014, an insight (or a reminder) of the way life was for people with Polio – both children and adults – in the early years of The Fellowship. It is quite likely that a short film such as this would have been shown in cinemas (television was in its infancy then, of course) between the ‘B’ film and the main feature, just before the interval. The lights in the cinema would then come up and one can imagine that volunteers from local branches would invite members of the audience to make a donation towards the work of The Fellowship.

It is ironic that the majority of cinemas in the 1950s were inaccessible to wheelchair-users, as were most theatres – a fact that wasn’t lost on people with Polio. The Fellowship was active at that time in persuading managers of cinemas and theatres to create wheelchair accessibility wherever it was possible.

A Life to be Lived is only 13 minutes long but, we can be sure, went a long way towards helping people with Polio or not to understand the situation of those who were facing the challenges of Polio and promoting the support that was available from The Fellowship.

The 1950s and 2014 – two films made over half a century apart; what are the differences? The 1950s’ film was made before the Polio vaccine was introduced, at a time when Polio epidemics were common and everyone lived in fear of the disease. Living with a disability was harsh, support services were hard to come by, and it fell to the lot

of voluntary organisations to give vital support, friendship, and advice.

The 2014 film is set at a time when people in Britain are largely immune from Polio by reason of the continuing vaccination of young children, and where many support services for disabled people are available. BUT today’s film is set in a time when the spectre of Post Polio Syndrome (PPS) haunts many, many people who have had Polio

in the past and who are seeing their lives change, bringing new levels of disability that could never have been imagined previously.

So there are massive differences in the context of the two films but, in reality, nothing much has changed. There is still a need for the support, advice, and personal involvement that The Fellowship has been offering to people with Polio for 75 years. The battle against Polio infection has been won in Britain, but the fight against

increasing disability, lack of knowledge by professionals, and a lack of public understanding simply goes on.

A Life to be Lived and The Journey – these are, effectively, synonymous terms for living with Polio. Seventy-five years ago the Fellowship’s founders set out to create an organisation that would be “something to lean on” for people with Polio. That task has not gone away and The Fellowship, through its members, its branches, staff, and resources, continues to provide that very special ‘something’ to support people with Polio. n

Were you ever on film for The Fellowship? Do you have memories of days gone by that have been captured on film or as photographs? If so, The Fellowship would love to see your pictures and hear your stories. Please contact the Fellowship Archivist – Barry North, at The Canon’s House, Stow Hill, Newport, NP20 4EA, at [email protected], or on 01633 212077.

Were you captured on film?

It is ironic that the majority of cinemas in

the 1950s were inaccessible to

wheelchair-users, as were most theatres –

a fact that wasn’t lost on people

with Polio.


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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.

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Two specially converted detached barnson 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 173860or visit www.treworgansfarm.co.uk

Irton House Farm The Lake District

Fully accessible, spacious 4 star self catering accommodation

Stunning views over lake & mountains in National Park

Cottages sleeping 2-6, all with wet roomsIdeal for exploring the beautiful North LakesOpen all year, friendly owners in residence

Call 017687 76380 www.irtonhousefarm.com

Disabled Motoring UK2012 “Happy Holiday

Award” Winners


my

way

When I was one month short of my sixth birthday in 1948 I

contracted Polio. I was in an iron lung for approximately two years and my parents received many calls to say that I was about to die! Yet despite all the odds I was able to finally leave hospital when I was 10 years old and had to wear a metal and leather spinal jacket.

During my time in Ashford Hospital I can remember being taken to the female ward along with several other youngsters for a film show. We were transported in a big wicker washing basket on wheels, which was also used to take us to the swimming baths, where we were tied to the rails in order to strengthen our legs.

Unfortunately, I became very shortsighted due to the comics being located so close to my face whilst in the iron lung and so my dream of joining the Air Force wasn’t possible.

During my final year at school a Careers Advisor told me I would not be able to work in the aircraft industry as I was disabled. To prove him wrong I got an apprenticeship at Fairy Aviation and qualified as a Design Engineer in the Drawing Office.

At 21 I met my wife and we married when I was 24 in 1966. A good year all round as I remember it! We adopted two wonderful children and I have managed to work all my life until my retirement when I was 65.

When I was 29 with two young children, after a routine medical for an insurance policy, I was told by my doctor that because of my medical history my life expectancy was 30 and I should not plan too far ahead!

When I was 57 I found that I couldn’t breathe laying down in bed and for three years slept upright in a chair without going to bed at all.

My wife nagged me about seeing a doctor and eventually contacted the doctor herself, who referred me to a local specialist. He was unable to help very much so I was then referred to the Lane Fox Unit at St Thomas’ in London. I was given a CPAP machine, later on this was changed to a VPAP, which, in my mind, is a miracle machine! The staff there are superb and Dr Hart is fantastic. Thanks to them I have been able to take many holidays abroad using oxygen on the plane, although two years ago I developed altitude intolerance despite using oxygen. My travels are now limited but still very enjoyable nonetheless.

I am now approaching my 72nd birthday. I have no chest or shoulder muscles but I can still drive and help my wife around the house. I still enjoy life, albeit a little on the slow side, and I trust I will be here for a while yet.

My wife Angela and I are both so very grateful for all the help that The Fellowship has given us both personally and in the bulletin.

Thank you. n

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, Peter Kennard tells

his story, including how he and his wife have valued The Fellowship over the years.

Thanks to The Fellowshipfor being there

march/april 2014 - british polio · pdf filebsit e w w w. gardenhea l th. c o m o ......

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