1. Who we are
Together for Short Lives is the UK charity for children’s palliative care. We are here to support and empower families caring for seriously ill children, and to build a strong and sustainable children’s palliative care sector – so no family is left behind.
In carrying out our work we collect and use personal information about individuals. We recognise the trust placed in us by individuals whose information we use. It is important to us that we are open and honest about the way we use information and we are committed to ensuring that we do so in a manner that is both lawful and respects your privacy.
Together for Short Lives is a registered charity in England and Wales (1144022) and Scotland (SC044139) and is a company limited by guarantee (7783702).
You can change how we contact you at any time, by sending an email to firstname.lastname@example.org or calling us on 0117 989 7820.
2. What data we collect and how we use it
The type and quantity of data we collect and use depends on why you have provided it.
We will only collect, use and otherwise handle your personal data:
- where you have consented to this for specified, explicit and legitimate purposes
- where this is necessary to fulfil legal obligations that apply to us
- where it is necessary for our legitimate interests relating to running our daily operations, as long as, in each case, these interests are in line with applicable law and your legal rights and freedoms.
2.1 Family Community
Together for Short Lives offers a wide range of information and support services to families and those who look after a child or young person who has a life-limiting or life-threatening condition, as well as families who have been bereaved.
We will store your contact details and preferences, and any other data that is relevant to delivering the service to you.
This information will only be used for the purposes of the service and not for any other purpose unless you give us permission to do so.
We will hold the data for up to two years after the end of the service, at which time it will be deleted.
Together for Short Lives runs an information and support helpline.
We only record personal data that is needed to help your enquiry. This data is not shared in any way and will not be used to contact you about other services or offers from Together for Short Lives unless you give us permission to do so.
We will store any personal data for up to one year after you contact us.
2.3 Family case studies
Some families kindly tell us stories about their experiences to help us in our fundraising and campaigns, including details about the health of their child. We will record the details of the story, and contact details in a secure location to enable us to get updated approval to use the story.
The safety of children is very important to us. If we display a child’s case study we do not display their personal or contact details.
We will keep this data for three years after you give it to us, and will always contact you each time we wish to use it.
Families, members and supporters kindly let us use images and video content of them to help bring our campaigns and activity to life.
We keep these images stored in a secure location and will only use them with the subject’s permission.
We keep these images for three years after we have been given them, unless you ask otherwise.
If you support us, for example by signing up to an event, donating or signing up to a campaign, we will usually collect your name, contact details, and whether you would like to be contacted, and how we would do so.
We use this information to thank you for supporting us and to provide you with further communications about our activities according to your preferences and interests. We also use it to fulfil our legal responsibilities for financial and Gift Aid reporting.
We will keep your data only for as long as necessary. If you have kindly donated to us, we are required to keep this data for seven years. If you have not donated to us, we will only keep your data for three years.
2.6 Professionals working in children’s palliative care
Together for Short Lives offers a wide range of information and support services to professionals who look after children or young people with life-limiting or life-threatening conditions. Some of these are members, either individually or through their employer organisation.
We will collect your contact details and preferences, and any other data that is relevant to delivering the service to you.
This information will only be used for the purposes of the service and not for any other purpose unless you give us permission to do so. Where you have given consent, we will use the information to send you updates on our work, including events and publications that may be of interest to you.
If you have been a paying member we will keep your details for 7 years after your membership ends. If you were not a paying member we will keep the data for up to two years after the end of the service.
2.7 Together for Short Lives Digital Care Forum
3. Who we share your information with
Unless we are required to share your data for legal or regulatory reasons, we will never share your data with other organisations.
We do use third-party organisations to help us collect donations such as Just Giving and Virgin Money Giving, and to help us fulfil our marketing. Where we use external companies to collect or process data on our behalf, we carry out comprehensive checks on these companies, and put in place contracts to control how they manage the data they may collect or have access to.
If you have made a gift aid declaration we will share your name, address and donation details with HMRC.
With your specific consent we may share your details with a third party service provider, to provide you with a service such as advocacy.
4. Keeping your data safe and up to date
We ensure that the most appropriate technical controls are in place to keep your data safely. Access to your data is regularly reviewed and only accessible to the relevant trained staff, volunteers and contractors.
To help us ensure that we only hold accurate and up to date data, we regularly use third-party data sources to clean our data. Where we use external companies to collect or process data on our behalf, we carry out comprehensive checks, and put in place contracts to control how they manage the data they may collect or have access to.
We carefully manage the communications we send you to ensure that we are contacting you in the most appropriate way and that we are not sending you unwanted communications. To do this, we may combine the information that we collect about you and analyse what we know about your interests, preferences and level of potential engagement or donation. We may use data that we have not directly collected from you, such as aggregated data at post-code level. We may also use statistical analysis on this data to understand the likelihood that you will be interested in or responsive to a campaign or message.
5. Website and emails
When someone visits our website we use a third-party service, Google Analytics, to collect standard internet log information and details of visitor behaviour patterns. We do this to find out information, such as the number of visitors to the various parts of the site.
If we want to collect personally identifiable information through our website, we will be up front about this. We will make it clear when we collect personal information and will explain what we intend to do with it. We will collect any questions, queries and feedback you leave. This will include your email address if you send us an email. Information on how people use the site, through cookies and page tagging, helps us improve our website and our services. Read the Together for Short Lives Cookies Policy.
We might also obtain your personal data through your use of social media channels such as Facebook, WhatsApp, Twitter, LinkedIn, YouTube and others, depending on your settings or the privacy policies of these social media and messaging services. To change your settings on these services, please refer to their privacy notices, which will tell you how to do this.
We use a third-party provider, Campaign Monitor, to deliver our large distribution emails. We collect statistics around email opening and clicks using industry standard technologies including clear gifs to help us monitor and improve our mailings. For more information, please see Campaign Monitor’s privacy notice.
6. Your rights
We will only collect the data that we need to carry out the purposes you have contacted us for or given us permission to use it for.
At any time that you wish you can:
- gain access to your personal information,
- object to the processing of your personal information,
- object to the use of automated decision-making and profiling,
- restrict the processing of your personal information,
- ask for a copy of your personal data (known as data portability),
- rectify or correct your personal information, and
- have your personal information removed (known as Erasure or the ‘right to be forgotten’).
Where you have provided consent to be contacted or to receive a service, you will be entitled to withdraw that consent at any time.
If you are at any point unhappy with the way that we handled your personal data, you can make a complaint to the Information Commissioner’s Office.
To make changes to how we contact you, please contact email@example.com
For all other requests please contact the Data Protection Officer at:
Together for Short Lives
New Bond House
7. Changes to this policy
We may change the terms of this privacy statement from time to time. If we do so, we will post the changes here so please check from time to time.