This policy outlines how Bliss collects your personal information and how we make use of this data. We will outline how we protect your privacy and your rights when it comes to personal data, and demonstrate how we keep your information safe. We are very proud of the values that underpin everything we do at Bliss to improve the lives of babies born premature or sick, including how we make use of personal data. We are:
- Trusted
- Supportive
- Ambitious
These values are the backbone of this policy which, together with our Supporter Promise, aim to demonstrate that we will only ever use your data to support our goal of reaching every baby born premature or sick in the UK. We will always do so in a way that befits the excellent reputation that Bliss wishes to uphold.
We want to thank the many thousands of parents, healthcare professionals, fundraisers, donors, volunteers and campaigners who make our work possible. We invite anyone to help us in our quest to be the best that we can be by providing feedback on this policy to ask@bliss.org.uk
Firstly, who are “we” in this policy?
We are:
- Bliss, a charity registered in England and Wales (1002973)
- Bliss Scotland, a charity registered in Scotland (SC040878)
- Bliss Sales, a company limited by guarantee (2609219)
We operate as one organisation in most of what we do, but there are different regulators that govern various activities that we take part in. For the purposes of this document when we say “we”, “us” or “Bliss”, we mean all of these registered bodies.
How do we collect information about you?
When you fill out a form on our website, order something from our shop, make a donation or sign up for an event, engage with us through social media or sign up for the Baby Bliss Charter we will need to collect a certain amount of information to process that activity. Other activities that Bliss carries out that will require the personal information to make sure we can carry out our work effectively include: campaigning, volunteering, training, research, case studies, involvement panels, or any of our work with parents or healthcare professionals.
When you use our website, we may also collect personal information using “cookies”. You can find out more about this in our Cookies Policy.
You may give us your personal information indirectly too. There are lots of services that make it easier for charities to collect sponsorship or signatures for a petition, for example, and many of these transactions will also need personal information so that we can thank you for your donation or make sure we’ve received the money. Examples of how we might get your information from a third party include
- Fundraising websites like Just Giving, Virgin Money Giving or BT My Donate
- Financial processing services like Paypal or your own bank
- Professional fundraising agencies
- Job sites like Charity Job.
- Campaigning websites like Engaging Networks
- Social media sites (like Facebook, Twitter or Instagram), depending on your own privacy settings
- If you are working on a research project that we have supported, we might have received your details from the main institution who first contacted us
- If you work in neonatal care and attended a Bliss training event, for example, your network or unit manager might have supplied us with your details
We may also sometimes supplement the information we have on you with information that is available publicly, but we will only do that when we have a clear reason to do so that would be in the spirit of our values and this policy. For example, if you tell us that you work at a particular neonatal unit, we might add that to what we know about the unit already from things on the hospital website. Or if you’ve done some fundraising and your story was featured in the local paper, we might add the article to our database so that we can say thank you next time we speak to you.
What types of information do we collect?
- We collect and store different types of information depending on how you interact with Bliss. Whenever we ask for personal information, we’ll always try to explain why we need it. We’ll outline in a bit more detail what we might use this for a bit further down the page, but here’s a list of the kinds of things we might ask you for:
- Your name
- Your contact details (such as your address, phone number or email address)
- Your date of birth
- Your gender
- Your bank or payment information when you make a donation or buy something from us
- Information about where you work, such as if you work for a particular neonatal unit or are doing some fundraising at work
- Information about how you are using our website (more information about this is contained in our Cookies Policy)
- Information about whether you are a UK tax payer to help us with claiming Gift Aid
- If you apply to be a volunteer or to work for us, we might need more information about your work history or details of any unspent criminal convictions
- If you apply for research support or funding, we might need to know more details about your previous research or work history
- If you have left us a gift in your will, we might need information about your next of kin or your lawyer
- If you sign up for the Baby Charter, we will need to know more details about the Neonatal unit including address, name, location, phone number, first point of contact (name, email address) and any the financial details we will need to collect payment.
- We may also collect and process technical information about your computer, including (where available) your Internet Protocol address, login information, operating system and browser type and version, for system administration purposes and to report aggregate information to other organisations (including our funders). When reporting to other organisations, this is statistical data about the browsing actions and patterns of usage of our sites and does not (of itself) identify any individual by name. For more information on this please refer to our Cookies Policy.
- Any other personal data you provide to us (This covers any information you provide to us that we haven’t already listed. If you ever have any questions about this, please email ask@bliss.org.uk)
Special types of personal information
Under the new data laws, there’s something called “Special Categories of Personal Data”. This data is special because it’s more sensitive, like your race or sexual orientation. Bliss doesn’t collect this information routinely, and if we do then we make sure we have a very good reason for doing so. Here are a few examples of when we might collect data that’s a bit more sensitive:
- When you apply to work or volunteer for us, we want to make sure that we are offering equal opportunities to everyone regardless of their background, so we may ask for information in line with our equal opportunities policy. Once we’ve collected this, we store it anonymously and will never use it for profiling or marketing.
- When you register to take part in one of our events, or an event on our behalf like the London Marathon, we may need to collect some health information to ensure you are not putting yourself at risk. This information is only used as an initial check, and we never keep it after we’ve processed your application.
- We will sometimes ask for information about your baby and their experiences while in neonatal care. We will only use this to make sure that the service we offer is the best it can be, or to ensure that we’re communicating with you in the right way. If, for example, you told us the devastating news that you had lost your baby, we might use that information to make sure we are speaking to you in the most appropriate and sensitive way possible.
- If you volunteer sensitive information to us when you interact with us, for example if you tell us you’ve had to drop out of an event for health reasons, or you’ve contacted our email support service, we might store that information to make sure we provide the best service or support we can. We will never use this information in any other way than the reason you voluntarily gave it to us.
- If you submit a case study or support any of our work by sharing your personal experiences with neonatal care, this may sometimes contain sensitive personal information. We will only use this information for the purpose you gave it to us, and will never use this information for profiling or marketing.
With all types of personal or sensitive information you give to us, we will always make sure to tell you why we are asking for it.
How do we use this information?
Everything we do is to help us with our aim of supporting every baby born premature or sick in the UK. We will always have the families’ best interests, and those of all of our supporters and stakeholders (that’s you), whenever we make a decision about personal data.
Here are some of the things we will use your personal information for:
- Providing you with the services, products or information you asked for
- Administering your donation or support your fundraising, including processing Gift Aid
- Keeping a record of your relationship with us
- Responding to or fulfilling any requests, complaints or queries you make to us
- Understanding how we can improve our services, products or information by conducting analysis and market research
- Managing our events, including managing any public health and safety requirements
- Checking for updated contact details against third party sources so that we can stay in touch if you move
- Sending you correspondence and communicating with you
- Processing applications for research funding and for administration of our role in the research projects we fund
- Administering our websites and to troubleshoot, perform data analysis, research, generate statistics and surveys related to our technical systems
- Testing our technical systems to make sure they are working as expected
- Displaying content to you in a way appropriate to the device you are using (for example if you are viewing content on a mobile device or a computer – see our Cookies Policy for more information)
- Generating reports on our work, services and events to ensure that we are effectively monitoring and evaluating everything we do
- Safeguarding our staff and volunteers and conducting due diligence or ethical screening
- Processing your application for a job or volunteering position
- Conducting training and quality control for our activities
- Auditing and administering our financial accounts
- Meeting our legal obligations, for instance to perform contracts between you and us, or our obligations to regulators, government and/or law enforcement bodies
- Carrying out fraud prevention and money laundering checks
- Undertaking credit risk reduction activities
- Establishing, defending or enforcing legal claims
- Furthering our charitable objectives
Bliss Champions and our email support service
When you speak to one of our Bliss Champions or contact our email support service, the information you provide is treated very confidentially and is only used to provide you with the support that you have requested. We may have to keep some emails on file for training purposes or to make sure we have dealt with your query properly, but this information will never be used for marketing or fundraising in any way. More information can be found in our privacy statement for hello@bliss.org.uk
How do we use this information to keep you updated?
News, updates and marketing
We send regular emails about our work, but only if you have opted-in to them. We try not to bombard you either; we send Your Bliss once a month, which contains news and updates about what we are working on, and each month we will also send one or two emails about specific appeals, events or campaigns. We very occasionally send appeals by post if we think you’ll be interested in them (more about how we decide if we think you’re interested below), and sometimes (if you have told us you want to be contacted in this way) we might contact you by SMS or phone about our work.
If you have registered for the Bliss Baby Charter
If you’re fundraising for us
When you sign up to an event or tell us you’re doing some fundraising in your local area, we want to support you to raise as much as possible. While you’re actively fundraising we will send you hints, tips and resources to help you make the most of your support, but once you’ve finished and we’ve thanked you, we’ll only contact you according to the criteria in the section above.
Analysis and targeting
Bliss has a duty to make sure that we spend our money wisely, which includes how we carry out our fundraising activities. To make sure our fundraising is as effective and efficient as possible, we use the information you have given us when you engage with us (such as when you give us a donation or you tell us where you work) to help us understand if you are likely to want to get involved in a different way. A few examples of this might be:
- If you have given to a particular appeal, we might use this information to send you a similar appeal in the future
- If you have given us a large gift or told us that you are a director of a large company, for example, we might do some further research so that we can understand how best to engage with you in the future
- If you’ve taken part in a particular event, we might see if you want to do something similar for us in the future
- We might sometimes use information from our appeals and fundraising activities to do some research and analysis to help us learn the best way to conduct our activities in future
- We might sometimes use information about which hospitals we are working with, for example, to see if there are any gaps in the support we are offering
If you have any questions about this, or you would like to opt out of your information being used in this way, please contact ask@bliss.org.uk
What are your rights with respect to data protection, and how do we uphold them?
The law states that you have a number of rights over the personal information we hold about you. We take this very seriously, so here is a bit of information about the rights you are entitled to:
- The right to be informed – This is what we are doing here. Any communication we send you and any time we collect information about you there will be a link to this page.
- The right to access the information we hold – You can ask us for the data we hold on you at any time. The easiest way to do this is via this form, but you can do so by emailing ask@bliss.org.uk or writing to us at Bliss, 1st Floor North, 10-18 Union Street, London, SE1 1SZ.
- The right to get your information corrected – If you notice that something is wrong about the information we hold about you, if we spelled your name wrong or you have moved house for example, just let us know and we will update it right away.
- The right to ask us to delete your information – If you don’t want us to use your information at all you can ask us to delete you from our systems, you just have to get in touch as outlined above. There are some reasons we might not be able to delete everything though. If you’ve given us a donation, we might need to keep some information for tax or audit purposes so that we comply with the proper regulations. Or if you’re volunteering for us, we’ll have to keep your details for safeguarding reasons. More about our legal obligations in the next section below.
- The right to object to how we use your information – As with asking to be deleted, you can tell us you don’t want us to use your data in a certain way. You can always opt out of all communications with us, for example, by clicking the unsubscribe link in an email or by contacting someone at Bliss directly. You can also ask us not to use your information for any of the things outlined in the “How we use your information section”, but as with the right to be deleted we won’t be able to do this if we have a legal obligation to keep some of your information.
- The right to restrict how we use your information – If you notice something is wrong with the information we hold about you, or you think we’re using it in an incorrect way, you can tell us not to use it. This means we will have to keep your data while we investigate or update it, so it’s not quite the same as the two points above (if you would like more information on this visit the ICO website).
- The right for your personal information to be portable – If we are processing your information because you have given us consent (like with our email newsletters or cookies), or to fulfil a contract (like when you volunteer for us), then you can ask us to send us your personal information in a digital format so that you can pass it on to another organisation. This only applies to digital information, but most of our information is digital so if you want us to do this for you just ask.
- The right to raise a concern with us - If you have a concern about how we are using your data, just let us know. There is a great template from the Information Commissioner if you want to write to us about it. We think we’ve put everything in place so we hope you won’t need this, but we are always listening if you have a concern.
- The right to know about any decisions not made by a person - We’re only a little charity, so we don’t have any fancy systems that do this. Our data is processed by people, not robots, but it is still important for you to know that this is one of your rights when it comes to protecting your data.
If you would like to exercise any of these rights, just email ask@bliss.org.uk or write to us at Bliss, 1st Floor North, 10-18 Union Street, London, SE1 1SZ.
What are your rights with respect to data protection, and how do we uphold them?
The law states that you have a number of rights over the personal information we hold about you. We take this very seriously, so here is a bit of information about the rights you are entitled to:
- The right to be informed – This is what we are doing here. Any communication we send you and any time we collect information about you there will be a link to this page.
- The right to access the information we hold – You can ask us for the data we hold on you at any time. The easiest way to do this is via this form, but you can do so by emailing ask@bliss.org.uk or writing to us at Bliss, 1st Floor North, 10-18 Union Street, London, SE1 1SZ.
- The right to get your information corrected – If you notice that something is wrong about the information we hold about you, if we spelled your name wrong or you have moved house for example, just let us know and we will update it right away.
- The right to ask us to delete your information – If you don’t want us to use your information at all you can ask us to delete you from our systems, you just have to get in touch as outlined above. There are some reasons we might not be able to delete everything though. If you’ve given us a donation, we might need to keep some information for tax or audit purposes so that we comply with the proper regulations. Or if you’re volunteering for us, we’ll have to keep your details for safeguarding reasons. More about our legal obligations in the next section below.
- The right to object to how we use your information – As with asking to be deleted, you can tell us you don’t want us to use your data in a certain way. You can always opt out of all communications with us, for example, by clicking the unsubscribe link in an email or by contacting someone at Bliss directly. You can also ask us not to use your information for any of the things outlined in the “How we use your information section”, but as with the right to be deleted we won’t be able to do this if we have a legal obligation to keep some of your information.
- The right to restrict how we use your information – If you notice something is wrong with the information we hold about you, or you think we’re using it in an incorrect way, you can tell us not to use it. This means we will have to keep your data while we investigate or update it, so it’s not quite the same as the two points above (if you would like more information on this visit the ICO website).
- The right for your personal information to be portable – If we are processing your information because you have given us consent (like with our email newsletters or cookies), or to fulfil a contract (like when you volunteer for us), then you can ask us to send us your personal information in a digital format so that you can pass it on to another organisation. This only applies to digital information, but most of our information is digital so if you want us to do this for you just ask.
- The right to raise a concern with us - If you have a concern about how we are using your data, just let us know. There is a great template from the Information Commissioner if you want to write to us about it. We think we’ve put everything in place so we hope you won’t need this, but we are always listening if you have a concern.
- The right to know about any decisions not made by a person - We’re only a little charity, so we don’t have any fancy systems that do this. Our data is processed by people, not robots, but it is still important for you to know that this is one of your rights when it comes to protecting your data.
If you would like to exercise any of these rights, just email ask@bliss.org.uk or write to us at Bliss, 1st Floor North, 10-18 Union Street, London, SE1 1SZ.
How do we keep your personal information safe?
The safety of your personal information is incredibly important to us. We have strict processes to make sure everything is safe, either by physically locking it away if it is on paper or by password protection and encryption if it is digital. We maintain our systems regularly and have rigorous oversight and monitoring of everything we do when it comes to your personal information.
How long do we keep your information for?
We will only keep your information for as long as should be reasonably expected, either for our legal obligations or to maintain our relationship with you. Your data rights are really important to us and as with everything we do, we use our core values (trusted, supportive, ambitious) when deciding how long we should keep your information for. And as outlined above, you can always tell us if you think we’ve made the wrong call. Here are a few examples:
- If you have told us you work in a neonatal unit, we will keep your information so that we can keep you updated on what we’re doing to improve neonatal care
- If you applied to work for us but were not successful, we will only keep your information long enough to give you feedback, then we will destroy it
- If you have opted to receive our regular email updates, we will keep sending these until you tell us not to
- If you are fully accredited for the Baby Bliss Charter. We will keep your information on record for 7 years after accreditation.
This list is really just to show some examples that demonstrate how we might make these decisions. We will always take into account your needs and the reasons you gave us your data, and will only ever use it for the reasons we have given in this document.
How do we keep your information up to date?
We will always aim to update your information as quickly as possible if you tell us any of it has changed. Sometimes we will also check your details against public information, such as the Post Office database, so that we don’t waste time or money posting you things to the wrong house if you’ve moved. We never buy data to add to the information we have on you, and we will only use a source like the Post Office that we think you would trust.
Do we share your personal information with other organisations?
We never share or sell your data for marketing to any other organisation. Because we’re a small organisation, there are some services that we have to use from other organisations, like sending out our Little Bliss magazine for example, or administering your direct debit. We take this very seriously and always make sure that we only share your data with organisations we have carefully vetted. Here is a list of times that may happen:
- When we send out large mailings, like appeals or our regular supporter updates, we use a mailing house so that our little office isn’t drowning in envelopes
- When we process your donation or direct debit, we have to use a payment provider
- If you interact with us on social media, those companies can sometimes also access your data, so it is a good idea to check your privacy settings with Facebook, Twitter, Instagram, YouTube and LinkedIn.
- For our fundraising campaigns, we might sometimes use a fundraising agency. This might include data and profiling experts, for example, so that we make the most of our fundraising investment
- When you visit our website, we use Google Analytics to optimise our site so that we can provide the best experience possible. The fantastic company who built our website, Electric Putty, will also have access to certain data for monitoring and quality assurance.
- The companies who provide our IT services and support also have access to the data we hold.
Some of our suppliers run their operations outside the European Economic Area (EEA), which means that they might not be subject to the same data laws as us. In these cases, we will only use their services if they are the best or only way to provide that benefit to our operations (like Google Analytics or Survey Monkey), and we will always carry out rigorous checks before we start using them.
We may also share your personal information if compelled to do so by the police or the various regulatory bodies who monitor charity activity.
What is the law that this policy adheres to?
The General Data Protection Regulation (GDPR) came into force in May 2018, and sets out the law in terms of data processing in the UK and Europe. This law outlines six lawful bases for processing personal information. Here we’ll outline what that means at Bliss.
When you tell us it’s ok (consent)
If we ask “can we contact you by email” and you tick a box marked yes, that’s you giving us your consent to send you emails. We use this for sending you marketing emails, so you'll never get this type of email unless you have ticked a box saying you’re happy to receive it. You can always withdraw consent at any time by clicking the unsubscribe link.
If you have indicated you would like to be contacted by phone or SMS, we will occasionally contact you in this way. If you wish to withdraw your consent for receiving phone calls and texts, just let us know and we will change this in our records.
When we have to (legal obligation)
If we have to use your data to comply with a law, we will definitely do so. Most commonly, this will mean financial information for auditing purposes, but it could be anything to do with the Fundraising Regulator, the Charity Commission, the Information Commissioner or any other regulatory body.
When we need to (performance of a contract)
If you buy a place in the London Marathon, for example, then your place in the race is subject to a contract with us. If you work for us or if we are funding your research project you are also under contract with us. In each of these cases, there will be certain things we need to do that will involve your personal information.
When it’s really important (vital interest)
If there is a situation where life or health is at risk, this might compel us to use your personal information. This could be your emergency contact details if you’re at one of our events or a safeguarding issue at a hospital that we’re working with.
When it helps us be the best we can be (legitimate interest)
This is the most complicated one, as it involves us interpreting what we think our purpose is as a charity to provide the best possible support for babies born premature or sick, and then balancing this purpose against the rights you have as an individual (as described above). We take this to mean that we have a “legitimate interest” to process your information in our daily activities if:
- Doing so helps us to achieve our aim of reaching every baby born premature or sick in the UK
- We think you would reasonably expect us to use your personal information in this way
- Using your information in this way would have no impact on your privacy and would not affect your ability to exercise your right to privacy
In practice, this falls into the following categories:
- Using your personal information to analyse previous campaigns, services, events or appeals to help us understand what worked and what didn’t. This may lead to the creation of a report to help us review our services, for example, or a profile for who we might want to target for future appeals.
- Sharing your data with relevant internal colleagues (for example our finance team), or external service providers (such as our mailing fulfilment provider outlined above).
- Sending you updates and appeals by post that we think you would be interested in. We only send a few of these mailings a year, and only then to certain people. We promise not to bombard you.
- Monitoring our technical systems
- Asking you to take part in research to help us improve the services we offer to parents and healthcare professionals.
We only rely on this basis for processing your information when we think it is in the best interests of the babies we seek to support, and even then only when we think you would not mind. As with the rest of this policy, if you would like to object or to provide feedback please feel free to contact ask@bliss.org.uk.
Complaints
If you are not happy with any of the ways we are using your personal information, we would like to hear about it as soon as possible. There are a few different ways of getting in touch outlined in this policy, plus you can make a formal complaint using our complaints procedure.
You can also lodge a formal complaint to the Information Commissioner if you prefer to seek assistance outside of Bliss.
Changes to this policy
We may change this policy if how we process your personal information changes for any reason. We don’t have any plans to do this right now, but if we do we will make it very clear on our website or by contacting you directly.
Edited: 14 January: Why (A new digital tool was launched to improve care within neonatal units. Changes to the privacy policy provide transparency on how we manage data for members of the tool).
Contact us
Please feel free to contact us at any time if you have any questions, comments or suggestions. All our relevant contact details are on our website.