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Living with a terminal illness and looking for support? Our Support Line team are here to help. 

 Reopens tomorrow at 8AM

by phone

 0800 090 2309 Calls are free from landlines and mobile phones. Find out more about our Support Line.

Patient information

This page explains your rights on how we use information about you, how we keep your information safe and confidential, and how you can access your health records.

What types of information do we have about you?
Where do we get your information from?
Why do we need this information?
How do we use your information?
How you can access your health records
Our commitment to you
For more detailed information

What types of information do we have about you?

The information we hold about you could include:

  • basic details, such as your address and next of kin
  • any contact we have had with you and when you have visited us
  • notes and reports about your health and any treatment you have received, either from us or other healthcare providers
  • relevant information from your relatives or those who care for you and know you well.

Where do we get your information from?

We get your information from your NHS healthcare team when you are referred to our hospice by your district nurse, GP or hospital consultant, or otherwise directly from you.

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Why do we need this information?

Your doctor, as well as other health and social care professionals looking after you, records details of your health and any treatments or services you have received.

This information helps us to provide you with the highest quality of care.

How do we use your information?

Your health records are used as a guide to help us to plan your care. We also use information about you to:

  • provide health and social care professionals who are involved in your care with relevant, accurate and up-to-date details about your health and other needs
  • enable us to provide you with a high standard of care
  • investigate any concerns or complaints you may have, either about your care or the standards of any health or social care professionals looking after you 
  • enable us to check and make improvements to our services

In some cases, we use your anonymised information (by removing anything that identifies you) for research purposes and to help us improve the quality of our services.

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How you can access your health records

The Data Protection Act 1998 allows you or, in some cases, a representative such as a family member, to ask for any information we hold about you and your care. This is known as a subject access request.

If you, or your representative, would like to request a copy of your health records, please follow these steps:

  1. Contact the Marie Curie Hospice which provided your care. For our hospice contact details, phone 0800 716 146 (Monday to Friday, 9am to 5pm) or visit our hospice webpages to find the contact details that you need.

    Or you can write to:

    The General Counsel and Company Secretary
    Marie Curie
    89 Albert Embankment
    London
    SE1 7TP

  2. Complete Marie Curie’s subject access form. If you need help or more information on how to make your request, please contact our hospice for advice or visit the Information Commissioner’s Office website  .

  3. Send us your completed subject access request form. To make sure you have proof of your request, we would advise you to use recorded mail delivery if you’re sending us your form by post; or if you’re sending your form to us by email, remember to keep a copy of the email.

  4. When we receive your request, we may ask you for proof of identity (such as your passport). If a family member is asking for your health records on your behalf, we may contact you to confirm the request or if we need more information from you.

A person’s health records are usually held for up to 10 years after their death.

According to the Access to Health Records Act 1990, other people are allowed to view your health records after your death – but only if they are your personal representative; an executor named in your Will; or someone who has a legal reason to access your health information.

A few things to note:

  • Requests for your health information are free of charge if the records you are asking for are less than 40 days old when you make your application. In other cases, you may be charged up to £50 to help us to cover our administrative costs, depending on the type of information you are asking for.
  • We’ll reply within 40 days of receiving your request form and any fees that are applicable. 
  • We’ll try our best to provide you with all the information you have asked for. If you think we have given you any information incorrectly, or you have not been given all the information you think you should be getting, please let us know by contacting the manager at the hospice that provided your care. 
  • In some instances, we may not be able to provide you with all the information you have requested. We may hold back certain information if it relates to another person and, as such, we would need their permission to provide it to you.

Source: Information Commissioner’s Office  

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Our commitment to you

The Data Protection Act 1998 and the NHS Code of Practice for Confidentiality set out the way we use your personal information. We have a number of processes that we follow to ensure your information is secure with us.

Sometimes we may need to share information about you with other agencies or individuals so that we can all work together for your benefit. We’ll only ever use or pass on information about you if other healthcare professionals involved in your care have a genuine need for it. They will also be subject to regulatory requirements to keep your information confidential.

For more detailed information

If you would like to know more about how we use your information or your rights under the Data Protection Act, please speak to the Hospice Manager. We can also provide information to anyone you may want us to, such as your family members or close friends.

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