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Easy Read Privacy Notice

Version - 2.0

Date Checked - 27/04/2026 

Next Check -27/04/2027

Review & Update by - Speakup Committee Jodie Bradley, Alison Owen, Antony Denman, Emma Marxh ,Phil Dale, Graeme Woodcock, David Gill Trustee, Roy Farnsworth Trustee, Vicky Farnsworth Chair   

Approved by - Vicky Farnsworth - Chair

Who We Are and What This Notice Is For

We are Speakup Self Advocacy.

 

We support people with learning disabilities and autism to have a voice, learn new skills, and be part of their community.

 

To do this we need to know about you, so we collect and use your personal information.

The law says we must keep your information private and safe.

 

These laws are called the UK General Data Protection Regulation (GDPR) and the Data Protection Act 2018.

 

These laws tell us what we must do with your information and what we must tell you.

This notice explains:

 

  • What information we collect about you

 

  • Why and how we use your information

 

  • How we keep your information safe

 

  • What your rights are

What Information We Collect About You

To support you well, we need to know some things about you.

 

We only collect information that helps us to give you the right support, keep you safe, and follow the law. 

 

We will always try to ask for as little information as possible, and we will keep it private.

 

The information we collect depends on the support or service you get from us.

This information may include:

 

  • Your name

 

  • Your date of birth

 

  • Your address and phone number

 

  • Information about your health and support needs

 

  • Information about your family or carers

 

  • The support you get from us

 

  • Notes about meetings or activities you take part in

 

  • Any other information you or your family give us to help support you​

We promise to only collect and use information that is needed to support you, and to keep it safe and private.

Why We Collect and Use Your Information (Lawful Basis)

We collect and use your information so we can:

 

  • Support you in the best way possible

 

  • Keep you safe and healthy

 

  • Meet our legal duties

 

  • Run and improve our services

The law says we must have a good reason to use your information. 

 

This is called a “lawful basis.”

 

There are a number of lawful basis that can be used, and the law says we must tell you what ones we are using:

 

  • Most of the time, we use your information because we need it to provide the support or service you have asked us for.

 

This lawful basis is called 6.1.b – Contract.

 

  • That service or support can include help to manage your health or social needs.

 

Because health information is very sensitive data, we need to use a stronger lawful basis allowed for that data.

 

This lawful basis is called 9.2.h – management of healthcare.

 

But sometimes, there are other reasons:

 

  • There is a law that says we must keep some records for the government or for safety.

 

This lawful basis is called 6.1.c – legal obligation.

 

  • We have been asked by the NHS, Council or other public body to do something important for the community.

 

This lawful basis is called 6.1.e – public task.

 

  • Sometimes, if there is no other lawful basis that works, we can only use you information when you give us permission to do so, but if we do ask you can say no if you don’t want it to happen.

 

These lawful basis are called 6.1.a and 9.2.a – consent.

 

We will always tell you why we need your information and will only use it for that reason.

If you want to understand more about the legal reasons we use your information, you can ask us.

How We Use Your Information

We use your information to:

 

  • Support you in the best way

 

  • Keep you safe and healthy

 

  • Meet our legal duties

 

  • Run and improve our services

We follow the rules in the law about how we use your information. These rules are called the data protection principles.

This means:

 

  • Transparency: We have to tell you what we are doing with your information and why – we do that through this privacy notice.

 

  • Purpose limitation: We only use your information for the reasons we have told you.

 

  • Data minimisation: We only collect and use the information we need.

 

  • Integrity and confidentiality: We keep your information safe and private

 

  • Accuracy: We make sure your information is correct and up to date

 

  • Storage limitation: We only keep your information for as long as we need it

We do not use computers to make decisions about you, everything we do is done by real people.

If we ever want to use your information for something new, we will tell you first.

Who We Share Your Information With

Sometimes, we need to share your information with other people or organisations to support you, keep you safe, or because the law says we must.

We may share your information with:

 

  • Doctors, nurses, or hospitals involved in caring for you

 

  • Social workers or care teams that also provide you with support

 

  • The NHS or your local council

 

  • Police or emergency services, if needed to keep you or others safe

 

  • Other organisations that help support you, like schools or voluntary groups

We will only share your information if it is needed to help you, keep you safe, or if the law says we must.

Sometimes, your information may be used for research or planning to help improve health and care services.

 

Sometimes there is a law that says we must share for this reason.

 

But when there is not a law, you can choose not to have your information used for research or planning.

 

This is called the National Data Opt-Out.

 

If you want to know more or want to opt out, please ask us.

We will always tell you who we share your information with and why.

Who helps us to use and protect your information?

Sometimes, we use other companies or people to help us with your information.

 

These are called “data processors.”

They might help us:

 

  • Store your information on a computer

 

  • Send emails or letters

 

  • Pay staff or volunteers

 

  • Run our website

These companies can only use your information to help us.

 

They must keep your information safe and private.

 

They are not allowed to use your information for themselves.

Here are the companies and people who help us to use and protect your information, and what they do for us:

 

List of data processor & brief explanation of what / why, i.e.:

  • Microsoft – stores our emails and files (UK/EU)

 

  • Mailchimp – sends our newsletters (EU/USA)

 

  • ABC Payroll – pays our staff (UK)​​

Where Your Information Is Kept

  • We keep your information safe in different ways, depending on what it is and how we use it.​​

Most of your information is kept on computers using Microsoft 365.

 

This includes things like SharePoint (for storing files and documents) and email (Microsoft Exchange).

 

Microsoft uses strong security to help keep your information safe, such as passwords, encryption, and checks to make sure only the right people can see your information.

Some information may also be kept on paper, in locked offices or cabinets.

We do our best to make sure your information is only kept in the UK, or in places that have strong rules to keep it safe.

If you want to know more about where your information is kept, you can ask us.

How Long We Keep Your Information

We use the NHS Records Management Code of Practice to tell us how long we should keep records for.

Most of the time, we keep your information for 8 years after we last support you.

 

This is because most of our records are about your health or support, and the Code of Practice says we must keep these for 8 years.

Some types of your information may be kept for a different amount of time.

 

For example, if you make a complaint, if there is a safeguarding concern, or if there is an accident or incident, we may need to keep those records for longer because the law and code of practice says so.

If you want to know how long we keep a particular type of information, you can ask us.

Your Rights

The Data Protection Act gives you certain rights over your information.

You can ask:

 

  • For a copy of your information, so you know what we know about you.

 

  • To change any information we have that is not correct.

 

  • To delete information about you if we don’t need it any more.

 

  • If you think something is wrong with your information, you can ask us to stop using it until we have checked and fixed it.

 

  • For your information to be transferred to another provider 

 

  • If we ask your permission, you can say no

 

  • For a real person to look at important decisions if these were made by a computer.

 

  • To make a complaint if you are not happy with how we use your information.​

Sometimes, these rights may not always apply, or we may need to keep some information because the law says so.

If you ask us to do something with your rights or information, we will always look at your request and explain what we can or cannot do.

If you want to use any of these rights, please ask us. We will always try to help you.

How to Get a Copy or Ask Questions

If you want to see the information we have about you, you can ask us for a copy.

 

You can also ask us about all the other rights listed above.

To do this, you can:

​

  • Speak to a member of staff

 

  • Call the team:

 

  • Email us at:

We will respond to your requests or questions as soon as we can, and will always aim to do this within one month.

If you need help to understand your information or our responses, we can support you.

How to Complain

If you are not happy with how we use your information, or how we have responded to your rights, you can make a complaint.

First you should complain to us, you can do this using the contact details provided above.

 

We will try to help and sort out any problems.

If you are still not happy after we have tried to help, you can contact the Information Commissioner’s Office (ICO).

 

The ICO is an independent organisation that makes sure people’s information is looked after properly.

 

The ICO contact details are:

 

Website: www.ico.org.uk 

Phone: 0303 123 1113

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