GoPI3Ks www.gopi3ks.com registered charity: 1176289

Contact details: Chairperson Mandy Sellars

Email address: gopi3ks@yahoo.com

PRIVACY NOTICE:

Your Personal Data:

When using our service, we may ask you to provide us with certain personally identifiable information that can be used to contact you or identify you. Personally identifiable information is as follows:

• Email addresses
• First name and last name
• Full address
• Medical details.
• Banking details.

What we are doing with your data:     

GoPI3Ks uses collected data for the following purposes:                                                                     

• To send an electronic version of our annual newsletter
• To send information on any up and coming family weekends/charity events
• To correspond for educational and/or to offer psychological support.
• To send funding application forms to any individual (living with PROS) who want to apply for funding to help with independent daily living.
• To transfer funds or send a cheque to an individual if their funding application is successful.
• All data is used only for our records & is not passed on to a third party.
• If we plan to use personal data for a new purpose, we will update our privacy information and communicate the changes before starting any new processing.

Consent: 

The initial information (email addresses) are collected at the initial point of contact with an individual where they are asked if they would like to ‘opt in’ to  our mailing list.

The individual also understands that by ‘opting’ in , they are giving their consent for their information to be securely stored by GoPI3Ks and for the GoPI3Ks team to communicate with them.

By providing an email address you consent to being informed about any GoPI3Ks related news/events

Also at the time consent is sought, individuals will be sent a copy of this ‘privacy statement’

Are staff adequately trained:

All trustees are required to safeguard any data, personal information or correspondence between themselves & GoPI3Ks families securely.

All trustees are fully aware of their GDPR obligations.

Refresher training and reviews of our practices shall be undertaken at regular intervals.

Information security & privacy:

Any data/information from our GoPI3Ks families that is kept electronically can only be accessed via a password laptop.

Any paper copies of data that could identify an individual:

• Name
• Address
• Date of birth
• Medical documents
• Bank details

These are kept intact in a locked container until they are no longer required and then measures are then taken to disguise any personal identifiable information, for example obfuscation of NHS number.

Information on portable devices:

All data/information on portable devices from any GoPI3Ks families shall be password protected.

How long will my information be kept for:

GoPI3Ks will hold data as long as we have an individuals consent.

Withdrawing consent:

Should anyone wish for their personal data to be withdrawn from our data base/mailing list, they can send an email to gopi3ks@yahoo.com with their name and email address stating that they wish to unsubscribe from our mailing list.

The email address and any other data stored electronically and/or paper records will be appropriately deleted, shredded and disposed of. GoPI3Ks will complete this action as soon as possible and within 30 days of the request being made.

The Right of Rectification:

Should any of the information we hold about you be incorrect or incomplete you have the right to request this be corrected.  Please email gopi3ks@yahoo.com with any request for data correction.  GoPI3Ks will carry out this request as soon as possible and within 30 days of the request being made

The Right of Access:

You have the right to request a copy of the information GoPI3Ks holds about you and to be provided with details of how we use your data.  Should you wish to see this information please email gopi3ks@yahoo.com and we will provide this information within 30 days of the request being made.

The Right to be forgotten:           

You have the right to ask us to delete all personal data we hold about you.  If you wish to make this request please email gopi3ks@yahoo.com  We will securely delete all your personal data as soon as possible and within 30 days of the request being made

Comments & Complaints:

Any requests on how we handle personal data can be sought from the chairperson, Mandy Sellars using the GoPI3Ks email address: gopi3ks@yahoo.com

If you have any concerns about how your data is being used or processed, please contact the GoPI3Ks chairperson Mandy Sellars on the following email address: gopi3ks@yahoo.com

Should you require any further information or have any further complaints then you can contact the ICO (Information Commissioner’s office) by following this link: https://ico.org.uk/concerns/ or call on 0303 123 1113.

SAFEGUARDING POLICIES & PROCEDURES:

 This document outlines the policies and procedures in place to protect individuals who come in to contact with our charity from harm. Plus details on safeguarding the charity from potential fraudulent funding claims, from the selling of items bought to help aid an individuals’ quality of life.

This includes:

• People who benefit from the charities work
• Staff
• Volunteers
• Those who come in to contact with the charity through its work.

Risks that trustees need to be aware of:

• Sexual harassment, abuse and exploitation.
• Negligent treatment
• Physical or emotional abuse
• Bullying or harassment
• Health and safety
• Commercial exploitation
• Extremism and radicalisation
• Forced Marriage
• Child Trafficking
• Female genital mutilation
• Discrimination on any of the grounds in the Equality Act 2010
• People may target your charity
• A charity’s culture may allow poor behaviour
• People may abuse a position of trust they hold within a charity.
• Online trolling/abuse.

Procedure(s) for Trustees:

Should any trustee believe that a safeguarding issue has arisen:

This should be shared with other trustees immediately.

• This can be undertaken by:

1. Arranging a face to face meeting
2. Group conference call.
3. Skype or other video calling methods.

• As standard practice minutes of the meetings should be taken and filed securely.

• Following the meeting, if a situation is deemed to be of a serious nature and potentially a legal matter, then the following should be adhered to:

1.  Contacting of the relevant authorities:

• Local police department.
• Local social services

If a situation isn’t a legal matter, the following should be offered:

• Suggesting they contact their GP.
• Suggesting the service user speak to their family members.
• Suggesting making contact with local counsellors.

Procedure(s) for users of the charity:

• If you have any concerns over safeguarding issues, users of the charity should make direct contact with the charity using the following contact details: gopi3ks@yahoo.com 
• If you have had previous contact with a trustee at the charity and would feel more comfortable contacting directly, then please use this contact method.
• You will receive a response within 3 days from one of our trustees outlining the following process:
• A meeting will take place between trustees to discuss how to proceed.
• The time frame for this will be relayed to the service user via the method in which they made contact.
• A response will then be sent explaining how the charity can help.

• If the situation is serious and of a legal nature this can take the form of:
  1. Contacting relevant authorities:
• Local police department.
• Local social services.

• If a situation isn’t a legal matter, the following can be proposed:
• Suggesting they contact their GP.
• Suggesting the service user speak to their family members.
• Suggesting making contact with local counsellors.

Health and Safety and First Aid Policy:

• All trustees, staff and volunteers have a responsibility to ensure that health and safety procedures are in place for all their service users.

Areas where health and safety procedures are needed, but not limited to:

• At fundraising events:
  • Securing of tables, roller banners, marques, that all food is covered and suitable for consumption.
  • That any vehicle being driven is within the speed limit and help is provided if there are a number of the general public in attendance.
• At organised events (family weekend)
  • Ensuring that members attending are aware of fire escapes and routes.
  • Dietary and allegen requirements have been appropriately forwarded to the correct team/staff member.
  • Service users are made aware of any trip or fall hazards in advance that could cause harm.
  • Every service user must be made aware of the nominated trustee, staff and/or volunteer as a go to should any issue arise.

First Aid Policy:

• There should be at least one trustee that has First Aid knowledge in attendance during any public event the charity attends.
• Service users should be made aware of who is the First Aider during any organised event.

Safeguarding Policies & Procedures to protect the charity:

Should any trustee feel that a funding claim has flagged up issues then the following procedure should be undertaken:

• This should be shared with other trustees immediately.

• This can be undertaken via various methods:
  • Arranging a face to face meeting.
  • Group conference call.
  • Skype or other video calling methods.

• As standard practice minutes of the meetings should be taken and filed securely.
• Should the trustees conclude that the claim isn’t genuine then a carefully worded letter/email is sent to the claimant stating that funding has been refused.

Protection for the charity of the selling of items funded to individuals.

• Any items bought to aid the quality of an individuals’ life should not be sold or passed on to any other parties when supplied and funded by the charity.

GOPI3KS TERMS & CONDITIONS:

The agreement was last modified in March, 2024.

Please read these terms and conditions for GoPI3Ks, which is owned and operated by www.gopi3ks.com completely: BY ACCESSING AND USING THE GOPI3KS WEBSITE IN ANY WAY, VIEWING OR BROWSING THE SITE, YOU ACCEPT AND AGREE TO BE BOUND BY THE TERMS AND CONDITIONS OF THIS AGREEMENT. IF YOU DO NOT AGREE TO ABIDE BY THE ABOVE, PLEASE DO NOT USE THE WEBSITE.

Site content:

This site and its content are for informational purposes only; this site is not be responsible or liable for the accuracy, usefulness or availability of any information transmitted or media available via the site and shall not be responsible or liable for any error or omissions in that information.

Intellectual property:

This site and its original content, features and functionality are owned by the GoPI3ks team of named trustees. The content is available for those viewing to share, pass along & link to for the sole purpose of education and/or raising awareness of PROS to those close to them, those within their wider community (eg: teachers, social workers, medical professionals) and the general public.

Links to other websites:

Our site does contain a number of links to other websites and online resources that are not owned or controlled by the GoPI3Ks team.

GoPI3Ks has no control over and therefore cannot assume responsibility for the content or general practices of any third party sites and/or services.

Therefore, follwing clicking on a link from the GoPI3Ks website, we strongly advise that the entire terms and condtions and privacy policy of any third party website is read and understood before proceeding.

Changes to this agreement:

We reserve the right to change these conditions from time to time as we see fit. We will do so by drawing attention to the updated terms on the site. Your continued use of the site will signify your acceptance of any adjustments to these terms.

POLICY ON RESERVES:

Guidance On Charity Reserves – (GoPI3Ks 1176289)

This guidance explains our policy on the charities reserves.

The majority of our funds in our bank account are unrestricted and are considered reserves that are freely available to spend on any of the charity’s purposes. . However, we do hold a small amount of funds that are restricted as of March 2024. This is explained below:

• As of March 2024, fundraising from one of our charity volunteers generated £1,541.60 to raise funds to help with the set-up of a patient registry for those living with PROS.
  • A patient registry is a collection of data related to patients with a specific diagnosis or condition.
  • One of the main benefits of patient registries is their ability to improve patient care. By collecting and studying data from many patients, it can help healthcare providers gain valuable insights into the effectiveness of different treatment plans.
• However, if the registry isn’t put in place, this money will become part of the unrestricted funds. This figure and any progress will be reviewed on a regular basis and updated in this policy.
• As a small charity we are run purely by volunteers with a very simple structure and uncomplicated activities, such as grant making, offering information and running family weekends.
• Our day to day running and operational costs are extremely low as we do not employ any staff, do not rent any property as running of the charity is done from the volunteers’ homes. Our trustees communicate through various means such as phones, social media and meeting in person. Although we are mindful of any reimbursement costs that occur should we meet in person, so this is carefully considered so as not to do this unnecessarily.
• Our sources of income currently comes from fundraising, occasional grants that have been given with no conditions as to how it is to be spent. We currently do not rely on any grants that may be renewable yearly.
• We do not budget to spend all of our funds that we receive each year, as each year is different in terms of the number of grant applications we receive and the amount that is needed.
• All our funds are given careful consideration during every meeting of the trustees and/or when we receive a grant application for financial help.
  • During a grant application, all trustees are given the opportunity to express their opinions on how our funds should be spent, if a grant applicant should receive all that they are asking for and if not a full explanation is given as to why only partial funding has been offered or why funding has been refused.
  • Trustees are also given updates on a regular basis as to what funds we have so that they can make decisions on grant making and fundraising to the best of their ability and for the benefit of the charity.
  • When organising events, such as our family weekend, every care is taken to involve all trustees in the decision making of the spending. Our expenditure on such things as venue hire, including accommodation, travel and reasonable out of pocket expenses for trustees is given careful consideration based on the amount of funds in our bank account and value for money.
• During any fundraising undertaken by the charity or its supporters, it is openly explained why we are raising funds and what the money raised would be used for. For GoPI3Ks our main aim is the prevention or relief of poverty for the public benefit of persons in need with PIK Related Overgrowth Spectrum (PROS) in particular by making grants to them.

Our reserves policy will be monitored and reviewed accordingly if there is any change in funding and/or the financial climate and other risks. This includes trustees exercising their power to call a meeting to discuss the possibility of holding income reserves, whether express or implied, only if in their considered view it is necessary to do so in the charity’s best interests.