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
PRIVACY POLICY
1. Introduction
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The British Polio Fellowship takes your privacy extremely seriously. This policy sets out how we collect and process any personal data you may provide to us when you use our services as a fellowship, sign up to charity events or become a member, and when you use our website https://britishpolio.org.uk/.
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This policy applies where The British Polio Fellowship (referred to as “we”, “us” or “our” in this privacy notice) identify as the data controller and where we are responsible for your data.
Contacting us
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The British Polio Fellowship has appointed a Data Protection Officer, who will be responsible for privacy matters and the protection of personal data we hold as an organisation, their details are below: Name: Kripen Dhrona Email Address: kripen@britishpolio.org.uk. Telephone number: 01923 884 628 The British Polio Fellowship is registered in England and Wales registration number (1108335) and Scotland (SC038863) A company limited by guarantee and registered in England and Wales No. 5294321. Central Office Address The British Polio Fellowship, CP House, Otterspool Way, Watford Bypass, Watford, WD25 8HR.
Making complaints
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If you are unhappy with the way we collect or process your personal information, you have the right to complain with the Information Commissioner’s Office (ICO) who are the UK’s supervisory authority for data protection. Complaints and concerns can be lodged with the ICO via this link: https://ico.org.uk/concerns/
We kindly ask that before any complaints are lodged with the ICO, that you contact us first to try and resolve any issues you may have.
2. What data do we collect?
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Personal information we may collect from you and process includes:
· Identity and contact info – such as your name, date of birth, address, email addresses, phone numbers and photographs
· Payment data – credit card or direct debit details when you become a member to our fellowship
· Health information – such as your NHS number, details to your medical history, medical notes and information from carers and third-party healthcare providers (Only if needed)
· Next of kin information (with their consent)
· Your gender, ethnicity, race and religion
· Cookies and IP address information when you use our website
Sensitive Data
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Under the General Data Protection Regulation/Data Protection Act (2018), sensitive personal data is data which includes information about your race or ethnicity, religious or philosophical beliefs, sex life, sexual orientation, political opinions, trade union membership, information about your health and genetic and biometric data.
The British Polio Fellowship does collect sensitive personal data as part of our fellowship and care services. Our lawful purposes for obtaining this data are set out in section 5.
3. How do we use your data?
We will only use your data for the following reasons:
· To provide you with the care and support we offer as a fellowship
· To liaise with other healthcare professionals and organisations regarding your treatment or ongoing care, if required
· To improve the quality of our services and charity
· To inform donors and potential donors of The British Polio Fellowship news, events and fundraising efforts
· To sign you up for any events we may be organising
· Defending a claim if we need your information to defend a legal claim against us by you or by another party
4. How do we obtain your data?
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We obtain your data in several ways:
· From relevant healthcare agencies, organisations and professionals
· From yourself or your next-of-kin when you are referred to the fellowship for your care
· Via paper and online forms when you sign up to be a supporter, sign up to our digital marketing or to attend one of our events
· When you use our website https://britishpolio.org.uk/
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5. Our lawful purposes for collecting and processing your information
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We have identified that we will use your information for the following reasons:
· With your explicit consent
· To protect your vital interests
· In the performance of a contract
· Where it is necessary for our legitimate interests (or those of a third party, with your consent) and your interests and fundamental rights do not override those interests
· We have identified that we will use your sensitive personal information for the following reasons:
· With your explicit consent
· To protect your vital interests
· Where it is necessary for reasons of public interest in the areas of public health
· Where we rely on consent as a lawful purpose for processing your data, you have the right to withdraw consent (where applicable) at any time by contacting our Data Protection Officer.
6. Who do we share your information with?
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· We may need to share your information with third parties to provide you with our services or to help us raise funds for our charity, these third parties include:
· The National Health Service (NHS)
· Healthcare professionals (such as doctors, consultants and nurses)
· Pharmacists and other third-party organisations involved in your care
· Any other person involved in providing services relating to your direct general healthcare, including mental health professionals, other charities or non-NHS health care professionals
· Local authorities, Commissioners, Clinical Commissioning Groups and the Care Quality Commission
· Organisations such as the Police, solicitors, courts and insurance companies to comply with the law.
· Services providers who host our website and systems
· Payment card providers who handle transactions on our behalf (for donors)
· Third-party marketing organisations we work with when you sign-up to our marketing as a charity
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7. International transfers
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Where possible, we ensure that your data is stored within the European Economic Area (EEA), however, some of our storage locations and service providers may be hosted outside of the EEA. When we do need to transfer your data out of the EEA, we ensure one of the following safeguards are in place to provide a similar level of security of your data:
· Your data has been transferred to a country that has been deemed to provide an adequate level of protection for personal data by the European Commission; or
· The hosting environment we use has specific contracts, codes of conduct or certification mechanisms in-place which have been approved by the European Commission; or where we transfer data to the United States, we ensure our providers are certified as part of the EU-US Privacy Shield programme.
If none of these safeguards is available, we will only transfer your data with your explicit consent – which can be removed at any time by contacting us. Please contact our Data Protection Officer if you want further information on the specific mechanism used by us when transferring your data out of the EEA.
8. Retention periods
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Your personal information will be retained following our data retention policy which categorises all the data assets held by us and specifies the appropriate retention period for each data asset. These periods are based on the requirements to keep the data for as long as necessary to fulfil the purpose for which it was collected, to meet any legal requirements or to satisfy any reporting, accounting or contractual needs. Please contact our Data Protection Officer if you would like further information on our retention periods.
9. Your rights
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Under the General Data Protection Regulation/Data Protection Act (2018), you have certain rights regarding your data, these include the right to:
· Request access to your data
· Request correction of your data
· Request erasure of your data
· Object to processing of your data
· Request restriction of processing your data
· Request transfer of your data
· Withdraw consent
You may exercise any of these rights by raising a subject access request with us. You can do this by contacting our Data Protection Officer.
We will not charge you for making a request and we will make all reasonable efforts to respond to you within 30 days. Sometimes it may take longer than 30 days to gather all the information we may hold on you, in this situation we will keep you updated at all times.
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You can instruct us at any time to stop processing your data for marketing.
We may refuse your request or withhold any personal information that you request if there is an overriding legal reason for us to do so.
10. Information security
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The British Polio Fellowship takes the security of your information extremely seriously. To protect your data, we implement a risk-based approach to adopt the strongest organisational and technical controls to protect the confidentiality, integrity and availability of your data.
11. Website and Cookies
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The only website this privacy policy applies to is the fellowship's website. If you use links to any other website from the fellowship's website, then you will need to read their Privacy policy. We take no responsibility (legal or otherwise) for the content of their websites
Cookies
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Our website uses cookies to track the use of it. This allows us to better understand patterns on our website and how we can develop and improve it, as well as analysing the traffic on our site for marketing or advertising purposes.
A cookie is a file containing an identifier (a string of letters and numbers) that is sent by a web server to a web browser and is stored by the browser. The identifier is then sent back to the server each time the browser requests a page from the server.
The cookies we use
· Forms related cookies:
When you submit data to us through a form such as those found on contact pages or comment forms cookies may be set to remember your user details for future correspondence.
· Site preferences cookies:
To provide you with a great experience on our websites, we provide the functionality to set your preferences for how this site runs when you use it. To remember your preferences, we need to set cookies so that this information can be recalled whenever you interact with a page to meet your preferences.
Third-Party Cookies
In some special cases, we also use cookies provided by trusted third parties. The following section details which third party cookies you might encounter through this site.
· This site uses Google Analytics, which is an analytics solution on the web, for helping us to understand how you use the site and ways that we can improve your experience. These cookies may track things such as how long you spend on the site and the pages that you visit so we can continue to produce engaging content. We might also use Google Analytics, which is a similar service, to ensure we have the best information possible to improve our service.
For more information on Google Analytics cookies, see their official web page.
· From time to time we test new features and make subtle changes to the way that the site is delivered. When we are still testing new features, these cookies may be used to ensure that you receive a consistent experience whilst on the site whilst ensuring we understand which optimisations our users appreciate the most.
Managing Cookies
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Most browsers allow you to refuse to accept cookies and to delete cookies. The method for doing so differs with each browser, the following guides for the most common internet browsers detail the processes for doing this:
· https://support.google.com/chrome/answer/95647?hl=en (Google Chrome)
· https://support.mozilla.org/en-US/kb/enable-and-disable-cookies-website-preferences (Mozilla Firefox)
· https://support.microsoft.com/en-gb/help/17442/windows-internet-explorer-delete-manage-cookies (Internet Explorer)
· https://support.apple.com/kb/PH21411 (Safari)
· https://privacy.microsoft.com/en-us/windows-10-microsoft-edge-and-privacy (Microsoft Edge)
Blocking cookies may impact your experience on our website as you may not be able to make full use of the features on it.
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12. Changes to this privacy policy
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We keep this policy under regular review. Any questions about this policy can be directed to our Data Protection Officer via the details set out in section 1 of this policy.
13. Information in other formats
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If you would like this notice in another format (for example audio, large print, braille) please contact our data protection officer via the email address above).
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