Privacy Statement

About this statement
We have put in place physical, electronic, and managerial procedures to safeguard and secure the information you provide to us.

This Privacy Statement tells you how Suffolk Parent Carer Network collects, stores and uses personal data.

Personal data is identifiable information about living people. We collect personal data to help us carry out our statutory role as the Parent Carer Forum for parents and carers of children and young people aged 0-25 with additional needs and/or disabilities in Suffolk, and to be a good manager of volunteers. We are telling you about this because it is our responsibility to stay within the Data Protection Act 2018 and GDPR rules. To find out more about these laws and your rights go to The Information Commissioner’s Office (ICO)’s website. Click here to visit the ICO website.

Our approach to privacy and personal information in general.

We are strongly committed to data security and we take reasonable and appropriate steps to protect your personal information from unauthorised access, loss, misuse, alteration or corruption.

We have policies and procedures that tell all Suffolk Parent Carer Network volunteers about what they should be doing to protect your privacy and personal data (the “Data Protection Policy”);

Your rights In relation to your privacy you have these rights:

You have the right to be told how we are dealing with your data

You have the right to have access to your data and to be told how it is being used in detail

You have the right to challenge the accuracy of the data and ask to have it corrected

You have the right to ask us to have your data deleted

You have the right to limit or restrict how the data is used

You have the right to have the data given to you in an accessible way

You have the right to object to how your data is being used

You have the right to have decisions about your data made by humans, not computers

You have the right to ask for information from public bodies

You have the right to raise a concern about how organisations use your data

Information we collect Here is a list of the personal data we collect, how and why.

Information from people making enquiries, via online forms in this site, phone calls or via e-mails direct to us:

This is personal data in order to help us get in contact with the person, such as name and email address. These contacts can be kept anonymously by using a case number. Often these contacts are from someone asking us for help or information about services. We will record a short summary of the request, so that we can respond to them properly. We may also collect the area they are from. This is so that we can monitor where we are getting contacts from. We will record what services we signposted to, so that we can monitor how we are doing in responding to requests.

Feedback and views from people about the education, health and social care services that they/ their children and young people access, via social media, via e-mail, via telephone or in person to our volunteers. We will use this information to understand how to improve the quality and safety of education, health and social care services by sharing the information with our partners. When we share this information we make it anonymous (in a form that no one can recognise the individual), or we will get the clear consent of the person to share that specific information.

Information collected during research projects:

The information we collate when conducting research may vary for a number of reasons that might include the type of research conducted or the subject matter. We might ask for your name and contact details (in case we need to get in touch about your participation in the research), anonymised demographical information (e.g. your age, gender and ethnicity) and other details if relevant. Suffolk Parent Carer Network will only collate information that is relevant to the research and we will never publish your name, or other information about you, without your explicit and informed consent (e.g. case studies). You will have the right to withdraw your consent at any time. Any personal data will be erased once the research project is complete.

Contact details for people interested in our work, such our members or people working in education, health and social care services: This is so that we can contact them to tell them what we are doing and to keep them informed about our work or things they need to know about being a member. It is our statutory role to promote and support the involvement of parents and carers in the commissioning, the provision and scrutiny of local education, health and care services. We will use the contact information of these people to circulate e-mails and other information including newsletters. We will ask these people if they want to receive newsletters. Email clicks and opens may be tracked to help us monitor performance. Participants can unsubscribe at any time by emailing and are reminded how to do so as well as being provided with this privacy notice.

On occasion we will receive information from the families, friends and carers of people who access health and social care services: This can inform providers and commissioners to help them deliver services that work for local people. Where it is practically possible, we will make sure that we have the consent of the person who received the care.

We sometimes receive information about someone who is at risk of harm: In these cases, we are required by law to share this information with a statutory service that will keep that person safe, in accordance with Suffolk’s safekeeping procedures. If contact with our service is made by telephone, people will be asked to verbally indicate their consent for us to store information about them and a record of this consent will be maintained. Sharing of personal data with Healthwatch Suffolk in no way negatively impacts your rights.

Information we pass on to other organisations We work with the National Network of Parent Carer Forums (NNPCF), Healthwatch Suffolk, the Care Quality Commission (CQC), local commissioners, our local authority, and the East and West Suffolk Alliances, to improve the quality and safety of education, health and care services. In normal circumstances any data we pass on to them is anonymous. If it is not anonymous, this would be because we have your consent to share the information, or where there is another very good reason to make the disclosure – for example, we may disclose information to CQC or a local authority where we think it is necessary to do so in order to protect a vulnerable person from abuse or harm. Getting help about your privacy and rights If you think we may hold personal data relating to you and want to see it please write to If you know that we are holding your personal data and believe that it may be wrong, or if you want it to be deleted or for us to stop using it, you have a right to request that it can be deleted or amended. Please make your request in writing to

Or send it by post to Suffolk Parent Carer Network, Brightspace, 160 Hadleigh Road, Ipswich, IP2 0HH.

If you feel that we have not met our responsibilities under data protection legislation, you have a right to request an independent assessment from the Information Commissioner’s Office (ICO).

You can find details on their website. Our contact details and key roles Suffolk Parent Carer Network is data controller for all of the personal data that you provide us with.

Any issues relating to the processing of personal data by or on behalf of Suffolk Parent Carer Network may be addressed to Suffolk Parent Carer Network, Brightspace, 160 Hadleigh Road, Ipswich, IP2 0HH. You can also call us on 07341 126455 or send an email enquiry to

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