Carers Self-Help Service Privacy Notice

The Carers Self-Help service provides one to one support specifically for people who care for family/friends who have autism spectrum diagnosis or who are identified as being ‘on the pathway’ to being diagnosed with autism. The service offers up to six sessions delivered by trained self-help coaches where we help carers with self-help techniques to manage any difficulties clients are currently facing. We use an approach which considers how stress makes people, feel, think, and behave, and cope with the associated physical symptoms. This approach is based on Cognitive Behavioural, or CBT. 

info button This Privacy Notice was updated on 29 August 2025

What data we need

To allow us to provide the service you would expect from us, we process the following information about you:  

  • Name 

  • Address 

  • Date of birth 

  • Telephone numbers 

  • Email address. 

  • Emergency contact details 

  • GP’s name, address and telephone number and the contact details of other health professionals involved in your health & well-being. 

  • Health and well-being information which helps us understand your care and support needs. 

  • Information about the outcomes you want to achieve and the steps you take towards them. 

  • Risk assessments. 

  • Support notes. 

  • “Core 10” scale information 

  • “Work and Social Adjustment Scale (WASAS) information 

Why we need it

During our initial discussion with you to determine your personal outcomes and explain our service, we will ask for your written consent to gather and process your personal information. We will use your information:  

  • to undertake and perform our obligations and duties to you in accordance with the terms of the support plan we agreed with you. 

  • to enable us to supply you with the services and information which you have requested or expect from us. 

  • to analyse the information we collect so that we can administer, support, and improve our business and the services we offer to you. 

  • to enable us to apply for appropriate benefits and services on your behalf. 

  • to contact you to send you details of any changes to our services which may affect you. 

  • for all other purposes consistent with the proper performance of our operations and business 

  • to contact you for your views on our services.   

We may also seek your consent to collect some information that is called ‘special category data’.  The provision of this information is voluntary, and you do not need to provide it. We collect this to help us understand demographic trends so that we can tailor the care and support services we provide. This will include information such as:  

Ethnicity 

Disability 

Religion 

Marital Status 

Sexual Orientation  

We do not share this information, and it is reported on in an anonymous format. 

Where we store your data

We store your information in a computer system called the ‘LinkLiving Information Management System (LLIMS)’. We may also keep some information on paper-based forms and if we do, these are stored in lockfast filing cabinets in our offices.  It’s also possible, if you have contacted us by email, that some information will be held in the email system (Outlook).  

 

We also have an electronic filing system or document management system (SharePoint), where any forms or correspondence relating to your care and support are scanned and stored. 

How long we keep your information

All the personal data we hold about you is subject to our data retention policy. We review our data retention periods regularly and will only hold your personal data for as long as is necessary to allow us to provide our care and support services, or as required by law (we may be legally required to hold some types of information).  

We will generally keep your information for the following minimum periods after which it will be destroyed if it is no longer required for the reasons it was obtained.  

 

Document Type 

Retention Period 

Support Plan 

5 years – from service end date 

Service reviews/risk assessments, etc. 

5 years – from service end date 

Letters/reports we receive or send in relation to your care and support 

5 years – from service end date 

 To view our full our retention schedule please click here. 

What is the legal justification

The personal data that we collect from you is gathered and processed with your signed consent. We will ask for your signed consent during the initial assessment of your support needs. By receiving a copy and signing this Privacy Statement (or by signing a data consent agreement and being provided with a link to this Privacy Statement on our website), you are providing your consent under the Data Protection Act 2018 for your data to be used for the purposes and retained for the period(s) specified in this document.  

There are certain circumstances when we have a legal requirement to record and retain personal data about you during the period we provide care and support. These circumstances relate to any adult or child protection concerns that come to light during the period we provide you with care and support.  

Any special categories of personal data we will ask for will be provided with your explicit consent. The details of your next of kin will be processed in your vital interests. 

Sharing your information

The information you provide to us will be treated by us as confidential.  

We may disclose your information to third parties who act for us for the purposes set out in this notice or for purposes approved by you, including the following:   

  • Referral agencies 

  • Housing Associations 

  • Statutory Authorities (HMRC, Local Authority, DVLA, etc.) 

  • Utilities (Electricity, Gas, Communication, etc.) 

  • Emergency Services (Police, Fire, Ambulance) 

  • Other support providers 

  • Medical Professionals, raising concerns or in a crisis. 

  • Social Work, raising concerns or in a crisis. 

  • Statutory Bodies for Adult Protection 

  • Regulatory Bodies, Care Inspectorate 

Receiving data about you

We may receive information from third parties about you in relation to the care and support services we provide to you. Any information received will be subject to the same storage and retention principles described in this privacy notice.  

Updating your information

If your details change, please contact Carers Self-Help Service on 01592 644048 or by email at admin@linkliving.org.uk  to inform us to ensure that the information we hold about you is up to date.  

Data Protection Officer

You can also contact our data protection officer at  datamanagement@linkhaltd.co.uk or by post to Link House, 2c New Mart Road, Edinburgh EH14 14L. 

Your rights

The right to access your personal data

You have the right to ask us for copies of your personal information.  

The right to rectification

You have the right to ask us to rectify personal information you think is inaccurate. You also have the right to ask us to complete information you think is incomplete.

The right to erasure

You have the right to ask us to erase your personal information in certain circumstances.   

The right to restriction of processing

You have the right to ask us to restrict the processing of your personal information in certain circumstances. 

The right to object to processing

You have the right to object to the processing of your personal information in certain circumstances.  

The right to data portability

You have the right to ask that we transfer the personal information you gave us to another organisation, or to you, in certain circumstances.  

You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you .   

Please contact us at  datamanagement@linkhaltd.co.uk  if you wish to make a request.   

 

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You are not required to pay any charge for exercising your rights. If you make a request, we have one month to respond to you.  

Please contact us at datamanagement@linkhaltd.co.uk if you wish to make a request.  

 

How to complain 

If you have any concerns about our use of your personal information, you can make a complaint to us at Link House, 2c New Mart Road, Edinburgh EH14 1RL or by email at   datamanagement@linkhaltd.co.uk   

You can also complain to the ICO if you are unhappy with how we have used your data.  

The ICO’s address:              

Information Commissioner’s Office 

Wycliffe House 

Water Lane 

WILMSLOW

Cheshire 

SK9 5AF 

Helpline number: 0303 123 1113  

ICO website:  https://www.ico.org.uk