Last updated January 2020
We take your privacy very seriously and will always do our best to protect your personal information. This Privacy Notice sets out how we collect, store and use your personal data. It also explains how we’ll keep it safe and how you can remain in control of its use.
We know that there’s a lot of information here, but we want you to be fully informed.
Rest assured that we never sell or share your personal information with other organisations for their own marketing purposes.
If you would like to receive this Privacy Notice in a different format, (Easy Read, Audio, Large Print or Braille) please contact our Supporter Services Team.
- Email: [email protected]
- Post: Supporter Services Team, Sense, 101 Pentonville Road, London, N1 9LG
- Phone: 0300 330 9257
- Who we are
- What personal data we collect
- When you use our website
- What we do with your information
- Sharing your information
- Our legal basis for processing your data
- How we look after your data
- How long we keep your data
- People who use Sense Services
- Staff and volunteers
- Your rights
- How to contact us
- Privacy notice updates
Who we are
For everyone living with complex disabilities. For everyone who is deafblind. Sense is here to help people communicate and experience the world. We rely on the generosity of thousands of supporters to continue our life-changing work supporting adults and children, so that no one, no matter how complex their disabilities, is isolated, left out, or unable to fulfil their potential.
Although you probably know us as Sense, our formal name is Sense, The National Deafblind and Rubella Association. We are a registered charity (289868) and a company limited by guarantee (01825301).
Sense International is a leading global charity supporting deafblind people in Bangladesh, India, Nepal, Kenya, Peru, Romania, Tanzania and Uganda. We are a registered charity (1076497) and a company limited by guarantee (03742986).
We have two subsidiary companies that run our shops and undertake other trading activities: Helping Sense Limited company number (02214430) and Sense4Enterprise Limited company number (08112973). Profits which they make are gifted back to Sense.
Our registered address is 101 Pentonville Road, London N1 9LG and we have offices, services and shops throughout England, Northern Ireland and Wales.
As our “family” includes Sense, Sense International, Helping Sense and Sense4Enterprise in the Privacy Notice the terms ;’Sense’ or ‘we’ ‘us’ and ‘our’ can refer to any of these organisations.
What personal data we collect
First things first, we want to let you know what personal data we collect and how we collect it.
Information you give us
This is information about you that you give us by filling in forms on our website or by corresponding with us by post, phone, email or otherwise. It includes information you provide when you make a donation, make an enquiry, volunteer, campaign for us, enquire about an event, use other social media functions on our site or buy or donate goods in our charity shops.
We will usually collect basic personal data about you like your name, postal address, phone number, email address and your bank and payment card details if you are supporting us financially.
Data protection law recognises that certain types of personal information are more sensitive. This is known as ‘sensitive’ or ‘special category’ personal information and it will only be collected where necessary and with your consent. For example, sometimes we need to collect health information from you when you register for a sporting event or volunteer on a Sense holiday. If we request such information, we will explain why we are requesting it and how we intend to use it.
Note: if you use a Sense service, then please see the section People who use Sense Services.
You can read about how we use your personal data in the What we do with your information section.
Sometimes, when you support us, your information is collected by an organisation working for us, but rest assured, we are responsible for your data at all times.
If you give us personal information about a third party (for example if you are asking for advice about a family member), we will confirm that you have their consent to do so.
Information we receive from other sources
Certain third party organisations collect data on our behalf as well as for their own use. We may receive your personal details from third party organisations for our marketing purposes where you have consented for this information to be shared.
For example, your information may be shared with us by independent event organisers like the London Marathon or fundraising sites like Just Giving or Virgin Money Giving or payroll giving companies. These independent third parties will only do this when you have indicated that you wish to support Sense and with your consent. These organisations will have their own privacy policies so please do make sure you read them before providing your information.
From time to time we may pay for the contact details of people who might be interested in hearing from us in future. Before we purchase contact information, we always check the wording used when your information was originally collected, to make sure that we only contact people who have an interest in receiving information from third parties. No data is stored on our systems unless you make a donation or tell us that you would not want to be contacted by Sense again in the future.
When providing permission for third party organisations to share your data you should check their Privacy Policies carefully to understand fully how they will process your data.
Supporter Research and Analysis
We may use data analysis and profiling techniques to ensure communications are relevant and timely, and to provide an improved experience for our supporters. We do this because it allows us to understand the background of the people who support us and helps us to make appropriate requests to supporters (for example for further donations or to leave a gift in their will). Importantly, it enables us to raise more funds, more quickly and more cost-effectively and so help Sense to continue to deliver services for people living with complex disabilities, including those who are deafblind.
We may also use additional external sources of data to increase and enhance the information we hold about you. This may include obtaining details of changes of address, date of birth, telephone numbers and other contact details, information related to your wealth, consumption and demographic data.
We occasionally use data from publicly available sources like the Charity Commission register, Companies House directorships, social media websites such as LinkedIn and newspaper articles. Such sources help us better understand our supporters and their philanthropic motivations, and to maximise their experience with the charity. We occasionally use this data to help us to approach individuals to invite them to special supporter events.
We are also legally required to carry out checks on individuals who give us large donations, to comply with our duties in respect of anti-money laundering legislation and the prevention of fraud.
On occasion we may invite you to participate in surveys or research about Sense or our work to help us improve our website, fundraising etc. Participation is voluntary and no individuals will be identified as a result of this research, unless you consent to us publishing your feedback.
If you do not wish us to use the profiling and data analysis techniques described above in relation to your personal data, please contact the Supporter Services Team whose details are given at the top of this notice.
When you use our website
Like most websites, we use ‘cookies’ to help us improve how we create, and how you use, our site. Cookies mean that a website will remember you, and can obtain an overall view of visitor habits and volumes to our website. You can read about the cookies we use and how to manage them on our cookies page.
If you submit a form through our website, we will store that information securely and it will only be accessed by appropriate staff. Some forms are on our website, we also use third parties for monthly donation and campaign forms.
If you make a payment, your payment details are securely processed by Worldpay or Paypal. We do not see your card details.
What we do with your information
Rest assured, our intentions are always good. We collect your information because we need it to help us fulfil your requests, keep in touch with you with relevant communications and fundraise legally and cost-effectively. So will use your data to do things like:
- Provide information, which you have requested, about ways to support Sense, our services and our campaigns
- Provide a service to you
- Process donations or other payments and verify financial transactions
- Process Gift Aid donations
- Process a purchase via one of our charity shops
- Involve you as a volunteer
- To check on your preferences from time to time to ensure they are up to date
- Record any contact we have with you to help us ensure we provide you with the most appropriate communications
- To administer and send you information about our legacy programme
- Prevent or detect fraud or abuses of our website and enable third parties to carry out technical, logistical or other functions on our behalf
- Analyse and report on the number and nature of contacts with the organisation
- Carry out research on the demographics, interests and behaviour of our users and supporters to help us gain a better understanding of them and to enable us to improve our service. This research may be carried out internally by our employees or we may ask another company to do this work for us
- Provide you with information that we think may be of interest to you if you have agreed to receive it for example, send fundraising appeals or invite you to participate in campaigns
- Digital advertising. We use third-party vendors including Google, Twitter and Facebook to show advertising on sites and apps across the internet. We may target advertising to you based upon your interests or past behaviour.
- We may also use remarketing, whereby your visit to our website is recorded via a cookie in order to later serve ads to you. For more information, visit our cookies page
- Note: if you use a Sense service, then please see the section People who use Sense Services
We will only hold on to your personal data for as long as we need to, usually for as long as you have an active relationship with Sense.
Sharing your information
We will only use your information for the purposes for which it was obtained. Rest assured that we never sell or share your personal information with other organisations for their own marketing purposes.
But there are some situations where we do need to share your information including:
- Third party suppliers – We may need to share your information with data hosting providers or organisations which help us deliver our activities for example send mail, process financial transactions, contact people on our behalf, or analyse data. We will only pass personal data to these organisations if they have signed a contract that requires them to abide by the requirements of Data Protection legislation and treat your information as carefully as we would
- If we believe it is necessary to protect or defend our rights, property or the personal safety of our people or visitors to our premises or websites
- Where we are legally required to do so, e.g. by a law enforcement agency legitimately exercising a power or if compelled by an order of the Court
We may want to use some of the information provided, including gender, age or the type of sensory impairment that people experience, to publicise Sense’s work. We will only make this information publicly available if we have the explicit and informed consent of the individuals concerned, or where appropriate their parent or guardian.
Occasionally, if you have given us permission to use your email address, we will try and match it to your Facebook account. This is so we can share relevant information with you in your newsfeed (known as Custom Audiences) or people who Facebook think share your interests (known as Lookalike Audiences). This allows us to communicate with you and engage new supporters to Sense, so we can do more to support people with complex disabilities including people who are deafblind. We do this by securely uploading a cypher of your email address to Facebook. If you have an account, Facebook will note your connection with Sense on your profile and then show you adverts for us that you might like to see, as well as delivering adverts to people with similar interests. Regardless of whether there is a match, the cyphered email address will be deleted from Facebook’s servers within 48 hours, leaving only an updated Facebook profile.
You can of course request that we do not use your email address in this way or for this purpose, whilst continuing to receive our emails. Simply contact our supporter services team on 0300 330 9257 or at [email protected].
Our legal basis for processing your data
We need a lawful basis to collect and use your personal data under data protection law. The law allows for six ways to process personal data (and additional ways for sensitive personal data). Four of these are relevant to the types of processing that we carry out. This includes information that is processed on the basis of:
- A person’s consent (for example, to send you direct marketing by email or SMS).
- A contractual relationship (for example, to provide you with goods or services that you have purchased from us).
- Processing that is necessary for compliance with a legal obligation (for example to process a Gift Aid declaration, and carrying out due diligence on large donations).
- Sense’s legitimate interests (please see below for more information).
Personal data may be legally collected and used if it is necessary for a legitimate interest of the organisation using the data, if its use is fair and does not adversely impact the interests, rights and freedoms of the individual concerned.
When we use your personal information, we will always consider if it is fair and balanced to do so and if it is within your reasonable expectations. We will balance your rights and our legitimate interests to ensure that we use your personal information in a reasonable way. Our legitimate interests include:
- Charity Governance: including delivery of our charitable purposes, statutory and financial reporting and other regulatory compliance purposes, and intergroup transfers of data.
- Administration and operational management: including responding to solicited enquiries, providing information and services, research, data analytics, events management, the administration of volunteers and employment, and recruitment requirements.
- Fundraising and Campaigning: including administering campaigns and donations, and sending direct marketing by post (and in some cases making marketing calls) and maintaining communication suppressions. Our normal practice is to keep in contact with supporters for a maximum of four years after their last activity (such as making a donation, taking part in an event, signing a petition or volunteering).
- There are two supporter groups who have an ongoing involvement with Sense with whom we continue to communicate until informed otherwise. This applies only if you are a company member of Sense (and so need to be sent information about the AGM, etc.) or have notified us that you intend to leave a legacy in your Will.
How we look after your data
We ensure that there are appropriate technical controls in place to protect your personal details in accordance with current data protection legislation; this includes secure servers, firewalls and SSL encryption. We follow payment card industry (PCI) security compliance guidelines when processing credit card payments and personal information transferred between locations will be encrypted and password protected.
Unfortunately, no internet-based site, including email, is 100% secure, although we will do our best to protect your personal data at all times. This includes regular reviews of who has access to information that we hold to ensure that your information is only accessed by the appropriate members of staff, volunteers and contractors.
We may use external companies to collect or process personal data on our behalf. We do comprehensive checks on these companies before we work with them and then work closely with them for the duration of our working relationship.
Some of our suppliers run their operations outside the European Economic Area (EEA). Although they may not be subject to same data protection laws as companies based in the UK, we will take steps to make sure they provide an adequate level of protection in accordance with UK data protection law. By submitting your personal information to us you agree to this possible transfer, storing or processing at a location outside the EEA.
If we work with organisations who process data in the USA we have verified their data processing standards meet the EU-US Privacy Shield, or another legal contractual basis which sets out clear safeguards and transparency responsibilities for US-based organisations processing data from EU citizens.
How long we keep your data
We keep your data for no longer than necessary for the purposes for which it was collected, taking into account guidance issued by the Information Commissioner’s Office.
The length of time that data will be kept depends on the reasons for which we are processing the data and on the law or regulations that the information falls under, such as financial regulations, Health and Safety regulation etc., or any contractual obligation we might have – such as local government contracts.
For example, we will keep a record of donations subject to gift aid for six years to comply with HMRC rules.
Legacy income is vital to the running of the charity. In order to carry out legacy administration and communicate effectively with the families of people leaving us legacies, we therefore may keep the data you provide us in the long term. This also enables us to identify and analyse the source of legacy income we receive.
If you request to receive no further contact from us, although we will act on that, we will keep some basic information about you on our suppression list to enable us to comply with your request.
Where possible we use publicly available sources to keep your records up to date; for example, the Royal Mail’s National Change of Address.
People who use Sense Services
If you, or a family member or someone for whom you are the carer, uses a Sense service please read this section which gives information about the use and storage of your data.
This will include sensitive personal data (for example regarding your medical condition) which we process because we are providing you with a health and social care service. Generally speaking this means that we don’t need to get your consent to process this data. However in some circumstances we do need your consent, for example if you are in contact with our Sense Specialist Services for children and young people.
Many service users have services which are commissioned by a local authority. In many cases Sense is processing the data on their behalf and they will continue to have access to it. In addition, where you live in a residential service, the Care Quality Commission (CQC) will also need access to your personal data in some circumstances.
If you use one of our services, we will hold your data on a computerised system and where necessary may also hold most of your personal data in paper files. We will hold this data in line with our security policy and use it to provide a service to you.
We will also collect and retain your information if you send feedback about our services or make a complaint.
We will retain your data for as long as we legally have to. For Children’s services this will be until you are 25. For adults, we will hold your data for up to three years after the service to you has ended, unless the service is in Northern Ireland where we will hold it for 8 years.
In very specific and unusual circumstances involving possible illegal conduct, we may need to hold records for a much longer period.
Staff and Volunteers
In addition to the information in this privacy notice, there are some individuals whose personal data is used for specific purposes that are covered by other privacy statements as follows:
As part of any recruitment and joining process, Sense collects and processes personal data relating to job applicants.
Once you have taken up employment with Sense, we will supply you with more details on the use and storage of your data via the staff intranet.
There are a wide range of volunteering roles at Sense. For any potential volunteering opportunities where you complete an application form (such as roles in one of our charity shops or on a Sense holiday) you will need to supply personal data for purposes such as gathering references and to ensure we are able to support you well while you are volunteering. The majority of applications are completed through a web-based system called Better Impact; others may be completed on paper. We will provide you with more details on the use and storage of your data during the application process and, if you take up a volunteer role, through your induction pack.
You have many rights under data protection legislation. If you wish to use any of these rights or discuss them further please contact the Supporter Services Team whose details are given at the top of this notice and in the How to contact us section. Your main rights are:
- Transparency over how we use your personal information (right to be informed).
This privacy notice, as well as any additional information that is provided to you either at the time you provided your details, or later, is intended to provide you with this information.
- Request a copy of the information we hold about you – this is sometimes called a data subject access or data subject request (right of access).
We will supply any information you ask for that we hold about you as soon as possible, but this may take up to 30 days. We will not charge you for this other than in exceptional circumstances. You will normally be asked for proof of identity as we need to be sure we are only releasing your personal data to you.
- Update or amend the information we hold about you if it is wrong (right of rectification).
- Ask us to stop using your information (right to restrict processing).
In certain situations, you have the right to ask for processing of your personal data to be restricted because there is some disagreement about its accuracy or legitimate usage.
- Ask us to remove your personal information from our records (right to be ‘forgotten’)
Note: where you have requested that we do not send you marketing materials, we will need to keep some limited information to ensure that you are not contacted in the future.
- Withdraw your consent
Where we process your data based on your consent (for example, to send you marketing texts or emails), you can withdraw that consent at any time.
- Object to the processing of your information for marketing purposes (right to object)
You also have a right to object to us processing data where we are relying on it being within our legitimate interests to do so (for example, to send you direct marketing by post).
- Obtain and reuse your personal data for your own purposes (right to data portability).
- Not be subject to a decision when it is based on automated processing (automated decision making and profiling).
If you do not think that we have processed your data in accordance with this notice or would like to make a complaint, please contact our Supporter Services Team in the first instance.
If you are not satisfied with our response or believe we are not processing your personal data in accordance with the law you may wish to contact the Fundraising Regulator or the Information Commissioner’s Office (ICO):
2nd Floor, CAN Mezzanine Building
49-51 East Road
- Telephone: 0300 999 3407
- Email: [email protected]
Information Commissioners Office
- Helpline: 0303 123 113
- ICO website
How to contact us
If at any time you’d like us to change the way we contact you, please contact our Supporter Services Team.
- Email: [email protected]
- Post: Supporter Services Team, Sense, 101 Pentonville Road, London, N1 9LG
- Phone: 0300 330 9257
Privacy notice updates
This Privacy Notice was last updated in January 2020.
It may be necessary for Sense to occasionally make alterations to this privacy notice. If we make any significant changes in the way we treat your personal information we will make this clear on the Sense website or by contacting you directly. Please do check the Sense website from time to time though for the latest version and let us know if you ever have any questions or concerns.