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Due to the recent changes in the Data Protection Act of 1998, the GDPR (General Data Protection Regulation) will come in to force on 25/05/2018


GoPI3Ks registered charity: 1176289

Contact details: Chairperson Mandy Sellars

Email address:


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 may include, but is not limited to:

  • 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 various 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
  • 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.



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.

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, such as, but not limited to:

  • address
  • date of birth
  • medical documents

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 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.


 Comments & Complaints:

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

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:

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: or call on 0303 123 1113.