WHAT IS POST POLIO SYNDROME
Post Polio Syndrome is a poorly understood condition that can affect people who have had polio in the past.
Polio is a viral infection that used to be common in the UK, but is now rare.
Most people who had Polio would have fought off the infection without even realising they were infected.
Some people with Polio would have had paralysis, muscle weakness and shrinking of the muscles. But usually, these problems would have either gone away over the following weeks or months, or remained the same for years afterwards.
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Post Polio Syndrome is where some of these symptoms return or get worse many years or decades after the original polio infection.
SYMPTOMS OF POST POLIO SYNDROME
Post Polio Syndrome can include a wide range of symptoms that develop gradually over time, including:
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persistent fatigue (extreme tiredness)
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muscle weakness
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shrinking muscles
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muscle and joint pain
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The condition can have a significant impact on everyday life, making it very difficult to get around and carry out certain tasks and activities. The symptoms tend to get gradually worse over many years, but this happens very slowly and treatment may help slow it down further.
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Post Polio Syndrome is rarely life-threatening, although some people develop breathing and swallowing difficulties that can lead to serious problems, such as chest infections.
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WHO'S AFFECTED
Post Polio Syndrome only affects people who've had polio. It usually develops 15 to 40 years after the infection.
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The condition has become more common in the UK in recent years, because of the high number of Polio cases that occurred during the 1940s and 1950s, before routine vaccination was introduced. It's estimated that there are around 120,000 people living in the UK who survived Polio when they were younger. Some of these have, or will develop, Post Polio Syndrome.
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It's not known exactly how many Polio survivors are or will be affected by Post Polio Syndrome. Estimates vary from as low as 15% to as high as 80%.
WHAT CAUSES POST-POLIO SYNDROME?
The exact cause of post Polio Syndrome is unclear. It's not known whether anything can be done to prevent it.
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The leading theory is that it's the result of the gradual deterioration of nerve cells in the spinal cord (motor neurones) that were damaged by the Polio virus. This would explain why the condition can take years to appear.
Post Polio Syndrome isn't contagious. The theory that the Polio virus may lie dormant in your body, causing Post Polio Syndrome when it becomes reactivated at a later stage, has been disproven.
It's not clear why only some people who've had polio develop Post Polio Syndrome. Those who had severe Polio when they were younger may be more likely to develop the condition.
Contacts us: 0800 043 1935
Email us: info@britishpolio.org.uk
OUR TRUSTEES
Our Trustees volunteer their valuable expertise to support and empower those living with the effects of polio and Post-Polio Syndrome (PPS)
Dr Gordon Richardson MBE
National Chairman
I contracted polio back in the 1950’s aged three years whilst living in Hong Kong. Initially I was almost totally paralysed retaining the use of my right eyelid only but as with most survivors I regained some muscle use in my head, shoulders and arms. Other than this I have been paralysed below the shoulders and consequently a full time wheelchair user.
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I joined the Fellowship many years ago – my memory fails me as to just when – but for a long time I did not have time to be involved with the local branch and was a Central Office member. Following retirement though I attended a number of AGMs and was persuaded by a Bristol branch member to join them and take a more active role which I did. Later I was invited to join the Western Region committee and subsequently was also appointed Vice-Chair of the Bristol branch. Local members became more and more concerned about the way the Fellowship was being run and it became clear that if we were not happy it was up to one of us to stand as a trustee and I was asked to do this on behalf of the Western Region.
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I hope to be able to bring 20 years experience running charitable trusts to the Fellowship together with my general understanding of financial matters (both accounting and investments) and my lived experience as a polio survivor.
Jerry Hutchinson
National Vice Chairman
‘Aiming to support the BPF in being an effective, inclusive and modern organisation which is able to provide relevant and valued services available to all U.K. Polio survivors, whilst continuing its long term and highly valued objective of offering and enabling fellowship for Members and potential Members.’
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I’m Jerry Hutchinson. I caught Polio in Castleford, West Yorkshire in the summer of 1957 when I was eighteen months old, so I don’t remember anything about the quarantine, iron lung etc. I’ve lived with the after effects which mainly affected my legs and after a number of childhood operations, led a relatively active life. I was diagnosed with PPS about 12 years ago. The intrusion of Polio into my life for a second time and a conversation with a friend who had also had Polio led to me finding out about the Fellowship in 2010.
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I retired in 2019 and having read about some of the problems the Fellowship was having I emailed the Chair early last year offering my services, if he felt that they could be of use. That led to me putting my name forward for the Board last year and being appointed as there weren’t enough candidates for an election. I have served for one year and it has been a steep learning curve, particularly as I am a ‘Central Office’ Member and not affiliated to a Branch. In terms of skill sets, I have been a solicitor for 40 years, although no longer practising and spent 41 years working in local government, 25 of those as a Chief Executive. I have a broad skill base which I try to use to make a difference in the organisations that I volunteer for, and I feel very privileged to now have the time and opportunity to make a difference for the community of Polio survivors which I was oblivious to when spending most of my life dealing with the after effects of Polio.
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My ambition as a Trustee is to play my part in formulating a sustainable and effective plan to take the Fellowship forward into the future with the support of the Members we represent and to be able to feel that at the end of my Term I have done my bit to make the Fellowship an organisation that can be valued by all of us.
Terry Blackman
National Treasurer
I became involved with the Fellowship when my friend Andy Mack, until recently a BPF Trustee, asked me to consider joining the Board of the charity’s trading company. Sadly that has now folded, but I got to know a lot about the Fellowship while I was a Director of the company. Now retired, I worked for 27 years as a public sector auditor, which included working with a lot of NHS charities. The BPF Trustees thought I could contribute to the main charity with my financial and accounting knowledge and experience, so I was co-opted onto the Board in July 2019 and elected National Treasurer this year.
From my experience so far I am very aware that the Fellowship provides a vital service to people who have had polio and may now be having to cope with PPS. After a tough time for the Fellowship in recent years there’s a real sense that it has ‘turned a corner’ and my aim is help ensure we stay on sound financial footing going forward. Although my remit is to help with the ‘boring financial stuff’, it’s very rewarding to be involved with a charity that does such good and vital work.
My main interests are music (I have too many guitars) and chess (I play too many online games). I am also Treasurer of the London Mining Network, an organisation that campaigns on the worldwide human rights and environmental impacts of London-linked mining companies.
Linda Davis
Trustee
'The charity is dear to my heart and I hope to make a difference.'
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I contracted polio at just three years old which weakened my right-hand side and left me with some breathing problems. I was treated at Great Ormond Street Hospital and I have very few recollections of this time apart from the fact the teddy bears seemed huge (I was only tiny); that my legs were being hit with "hammers"; and being dragged by my grandmother to ballet lessons thought to be good exercise. Ballet dancer I am not.
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So with a near normal childhood, my life was no different to my brothers and sisters, as I got older I suffered more aches and pains and walked badly wearing my hips out, but two hip replacements later and with the assistance of a wonderful asthma specialist who helped me greatly, I have done a lot with my life. I have three children and five grandsons and have had many lovely holidays around the world and a successful career in banking - followed by 10 years part-time working for the BPF.
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I feel my experiences (both good and bad) in banking; at Central Office; and within other volunteering roles will prove invaluable in my Trustee role.
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As a Central Office member, apart from speaking to Branch and Group members, I have little experience of their meetings etc which I intend to gain by visiting some Branches when we can move around freely again and be able to assist in helping to keeping this wonderful charity in existence.
Frances Quinn
Trustee
I contracted Polio in 1957 in Northern Ireland, in hospital for about two years; I have muscle loss in both legs and arms, though I can walk with sticks. I was a member of the Northern Ireland Polio Fellowship and benefited from swimming sessions and Christmas parties, but didn't keep the membership up as an adult. Like many people, when trying to understand PPS, I rejoined the BPF.
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I joined the Cheshire group, but changed to the Merseyside Branch because it met in the evenings as I still worked. Both groups were a great help and fun with lots of valuable advice. Unfortunately, living now in Cumbria the nearest groups are quite far away.
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After retiring in 2009, I did an MSc research project on polio (thanks to those of you who helped) leading to me joining the expert panel in 2012. I applied to be a trustee as there is vital work to do for polio survivors, providing information and support, raising awareness of this often neglected community. There has been huge change in the past few years, and a lot of change still to come and I want to help determine the future of the Fellowship - which is needed now as much as ever.
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I want to help develop a long-term strategy, which recognises the changing needs of older polio survivors, and the different needs of younger people increasingly seeking help. I want to help raise awareness and knowledge of PPS in the UK. Lastly - a local group in Cumbria would be great!
Sue Brown
Trustee
'I am keen to help the BPF and its members in order to ensure that the Fellowship actively engages meaningfully and provides the level of support those members need going into the future.'
I have been a member of the Fellowship and Berkshire Branch since the 1970s, currently serving on the committee and representing Berkshire at the South of England Region, where it is great to meet those from other branches and get to hear about their activities, fundraising and difficulties.
I am delighted to become part of the leadership team as a Trustee, even in challenging times, with an eye to forging ahead to keep the Fellowship going to respond to the needs of its Polio members.
I am a non-Polio member but have had years of experience looking after my mother, who contracted infantile paralysis in 1937. Along with the needs of other polio survivors in the branch, it has given me a sound understanding of issues and needs.
My background is in education, as a teacher and headteacher for nearly forty years, which I thoroughly enjoyed. The skills of leadership as a head will, I believe, stand me in good stead in taking a strategic view of the Fellowship, making tough decisions, holding people to account and keeping then children, now polio members, at the forefront of decision making.
One thing stands out for me and that is the amazingly strong spirit of our members, the congeniality, and the support they give each other, with a great deal of good humor.
I am really looking forward to working with the other Trustees, experienced and newcomers, and the positive team at Central Office.
Michael Harper
Trustee
I contracted polio aged 6 whist on holiday visiting relations in Wigan Lancs, polio affected my right leg, I have enjoyed a very active life, against the odds, joining the Merchant Navy and sailing to Australia many times with the P&O, we ran a Haulage Business for 22 years, I met Viv my wife in the sixties and now married for 56 years, 5 Children, 10 Grandchildren, and 6 Great-Grandchildren, I am Chair of The Lincolnshire Branch and the East Midlands Region, I enjoy all kinds of sport, and was a vice president of Reading Football Club for a number of years, many of you will know me from the national games held each year in Leicester.
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I have put myself forward for election to become a Trustee as I believe I have a lot to offer the current Board and the future of the Fellowship in general.
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I have organized many charity fund raising events including The Solent Charity Cruise which has been very successful for the past twenty five years raising thousands for good causes, I am proud to say that the BPF have been the recipient many times especially when based at Ruislip. I would like to help with the Strategy plan especially membership.
Archie Leyden
Trustee
I had polio in 1958 at the age of 18 months, my first memory of the BPF was about 1962 and was a swimming gala in Kirkintilloch baths.
I wore a metal calliper until 1990. My ankle was fused at 16 to help me walk better. I had to have it fused when I was 35. During my working life as an engineer, the second fusion that I had on my ankle proved not to be as successful as the first. I was diagnosed with PPS in 1997.
I have been a trustee before and enjoyed most of my time on the Board working with many different trustees and we shared ideas and practises of how the BPF should be run. My times as a trustee were both interesting and informative. I am standing for election because I believe passionately that the work done should always have all BPF members at its heart. I believe the work the present Board are doing is on the right track and would really like to be part of this. I have always used my experience working for various charities including disabled ramblers, access panels, Scottish Region chairperson and, at the moment, have added working as a generalist adviser with Citizens Advice.
During my time as a trustee, I have been contacted by members from all parts of the UK asking questions on many subjects which my experience over the years enabled me to answer in full.
Linda Evers
Trustee
I had polio aged 15 months which mainly affected my right leg. PPS now means that I can only walk very short distances using elbow crutches. Prior to retirement, I worked for HMRC as a VAT Inspector and Trainer. I am married with three children and nine grandchildren.
I have put myself forward for election as a Trustee as I believe that the last couple of years of lockdown have been difficult for many of our members who may be struggling. I would also like to extend the work being done to ensure that the varied needs of people with
the effects of polio and PPS are considered by the medical profession when we are being treated for
other conditions, as, from experience, these needs are often ignored, resulting in much longer than necessary recovery/rehabilitation.
I have been a member of the British Polio Fellowship since 1949 and have been an active member of the Leeds Branch for over 40 years, currently Treasurer. I have also served as Yorkshire Region Treasurer. Previously, I served as a BPF Trustee for nine years, including a period as National Treasurer. For twenty two years I was a school governor and am currently a Trustee of a local charity. This has, I feel, given me a great deal of experience to bring to the role of Trustee, particularly in the area of finance.