support services privacy notice
When you contact SMA Support UK Information and Support Service, your contact information and brief details of your enquiry are stored carefully and held securely using a computerised database. We use this information to assist you with your enquiry.
Our mailing lists:
If you have given us your contact details, we will add them to our ‘Inspirations’ newsletter mailing list. This tells you about our services, awareness raising initiatives and fundraising campaigns. If you have given us an email address, we will add this to our monthly E-news mailing list. E-news keeps you informed about developments in services and research, campaigns and surveys, social and fundraising events and other general information and news.
We will write to you to tell you more about SMA Support UK and make sure you know you have the option to unsubscribe from any of our mailings by phoning us on 01789 267 520 or emailing email@example.com This option will also be clearly available every time one of these communications comes to you by email.
If you have a lot of contact with our service, we will need to gather and record relevant personal information so that we can provide you with the most effective support service. We may need information from other health and social care professionals supporting you. Your information may be shared within our Support Services Team.
If you have a lot of contact with us:
If your contact with our service is for more than a ‘one off’ information call, we will need to gather and record relevant personal information so that we can provide you with the most effective support service. We may, with your permission, need to gather information from other health and social care professionals supporting you. Your information may be shared within our Support Services Team.
Whatever contact you have with us:
Your personal information and any child’s personal information, will never be disclosed to anyone else unless it is necessary as part of our support service. You will always be asked if you agree to this. The only exception to this is if we are ever concerned that someone is a danger to themselves or others or we believe a child or adult is at risk of harm. We also keep in touch with the UK SMA Patient Registry. We don’t share your or any child’s personal contact information with the Registry Curator but we do let them know if you tell us of a significant change in your circumstances that will affect your participation in the Registry.
We do produce statistical returns and reports about our services and the feedback we receive. Any information used in this way is always anonymous.
How long we keep information:
If you no longer wish to receive our services, we normally keep your and any child’s records for seven years in case you decide to come back to us. Contact includes being in contact via our monthly E-news or our twice-a-year ‘Inspirations newsletter. After this your record is deactivated.
You may at any time ask to see copies of any information we hold about you.
Last reviewed and updated April 2017.