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
BECOME A TRUSTEE
Trustee elections take place this year, with a ballot in the Summer. The nomination period will start in
April (with a proposed information session early that month). The number of vacancies can vary,
but at the least, there will be four positions to vote for. If you have a desire to serve The Fellowship, then you can apply to kripen@britishpolio.org.uk for a Trustee Information Pack.
Interested in becoming a Trustee?
All registered members can stand (properly nominated). You do not have to have served as a Regional or Branch Officer, but this may help. As well as a Trustee of the charity, you will also be registered at Companies House as a Director. At least 75 per cent of the Board must have had Polio (ie: six out of eight).
Currently seven Board members are Polio survivors. Terry was co-opted as a Board member in 2019 after his excellent work with BPFT. There is not an age limit, but you must consider mobility for travel to Board/ Finance Committee Meetings.
The Fellowship needs Trustees with charity business, finance and management enterprise but also a desire to serve fellow members. The current Board is fortunate to have members with a wide variety of skills, including housing and property management; event management; accountancy and finance; marketing and PR; arbitration, tribunals and HR; and business consultancy.
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The Board would be keen to see interest from candidates with the following experience/skills:
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Membership organisations
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IT
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Finance/Accountancy/Budgeting
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Fundraising/ Income generation
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Strategy Planning
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Marketing/PR/Social Media/Website
At present we hold six full Board meetings (on a Saturday bi-monthly) and there is also an AGM. Board
meetings may be mid-country, to accommodate Trustees who have a long way to travel, and to avoid
costly hotel bills. Reasonable, receipted expenses can be claimed. We do not attend any glittering events and
in this past year only two receptions have been visited by individual Trustees. Present and past Trustees have
been splendid in Gift Aiding their claims back to The Fellowship, but this by personal choice.
Although the Fellowship has turned a corner, tough decisions will need to be made and we all strive for the
betterment of the fellowship.
Members and Fellowship are at the heart of everything the Trustees do.
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Information Day for interested parties Wednesday 12th April 2023
Open Nominations Thursday 13th April 2023
Close Nominations Friday 12th May 2023
Issue Ballot Papers Wednesday 3rd July 2023 (via the bulletin)
Close of Ballot Thursday 24th August 2023
The duties of a Trustee explained
Considering taking on the duties of a Trustee is a big responsibility and should not be entered into lightly. For anyone interested in finding out more or members intending to put themselves forward as a Trustee of The British Polio Fellowship, we strongly recommend reading the Charity Commission’s guidance for England and Wales on the subject.
The guidance is entitled The Essential Trustee: What you need to know and is now in its third edition. The code has been revised in response to the many challenges the charity sector has faced over the last few years. Much of the negative publicity attracted by poor practice by some charities over the last two years could have been avoided if they had taken more heed of the code – and by applying in practical terms what some have clearly regarded as mere guidelines.
The code recognises that many Trustees are volunteers and as such can make innocent mistakes like the rest of us, but following the guidance helps Trustees to make decisions and giving them the tools to understand what is really going on. The code starts with a foundation principle. It should be a given that all Trustees understand their legal responsibilities (have proactively made efforts to do so) and are committed to good governance. Sadly, recent cases in the press have shown this is not always the case and has served to give many in the Third Sector a bad name, which is sad when the majority undertake their duties competently and sincerely.
At the heart of the guidelines are the seven principles of leadership: integrity; decision making; risk and control; Board effectiveness; diversity; and not least, openness and accountability. As well as being important in their own right, these factors inspire confidence by demonstrating to members and third parties and donors that a given charity is trustworthy.
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All Trustees have a legal duty to act in the charity’s best interest (and deal with any conflicts of interest); manage the charity’s resources responsibly (implement appropriate financial controls while managing risk) and act with reasonable care and skill – particularly in terms of taking appropriate advice when needed. Trustees found in breach of such legal duties can be held responsible for the consequences, so this is a very serious matter.
The Trustees must also be able to explain and justify their approach if necessary.
Are you eligible to be a Trustee?
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Legally you must be over 18 years of age (in the case of The British Polio Fellowship)
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You must be appointed following the charity’s procedures and any restrictions
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No unspent convictions involving dishonesty or deception (such as fraud)
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Being bankrupt (or entering a formal arrangement with a creditor)
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Removal as a company director or Trustee because of wrongdoing
Trustees must:
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Ensure The British Polio Fellowship complies with charity law requirements and other laws
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Take reasonable steps to find out what the legal requirements are
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Act in the charity’s best interests
Acting in the charity’s best interest my sound obvious but involves making informed decisions about the short and long-term future and must avoid putting the charity’s assets or reputation at undue risk. Trustees must make decisions solely in the charity’s interests. This means not allowing judgements to be swayed by personal prejudices – or for that matter by dominant personalities.
Trustees who simply defer to the opinions or decisions of others are not fulfilling their duty.
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We hope the short piece above gives some insight to what the role demands but would urge all would be Trustees to read the Charity Commission’s guidance document in full.