Accessibility:

Your information: how we use and keep it

1 Our patients

We collect a lot of personal information from and about you, your family and from other services. We need this information so that we can provide you with highest quality care and treatment. This personal information includes:

  • details about you, such as your address, date of birth, occupation
  • details of treatment, investigations, care and advice we have given you and
  • relevant information from and about people who care for you and know you well, such as relatives, carers and health professionals.

How your records are used to help you

All St Christopher’s health and social care professionals involved in your care need to have accurate and up-to-date information to assess your condition and to give you the best possible safe and effective treatment and care.

Your records also allow us to review the care we provide, to make sure it is of the highest
possible standard and meets all your healthcare needs.

We may need to share information about you so we can all work together for you

Sharing information within St Christopher’s team

Members of the hospice team looking after you may share your personal information with each other, for example, details about you and your family’s contact details, and notes and reports about your health and the care you need. This team may include nurses, doctors, therapists, pharmacists and clerical support staff plus students and trainees in medicine or other health and social care professionals who are looking after you.

Sharing information outside St Christopher’s team

Often it is necessary to share your information with professionals in other services who may be directly involved with your care or if you need treatment elsewhere. This helps provide seamless
care amongst partner organisations providing care to you. Such professionals might, for example, include GPs, hospitals, ambulance services and social care services. Your information will only be made available if there is a genuine need to do so. Some of this information sharing may be from use of central digital clinical systems: be reassured that we have strict information sharing
agreements with all of these services to ensure the confidentiality of your information.

You may also ask for your information to be transferred to another service, and we will always agree to transfer the information requested, unless there is a good reason why we cannot. If so, we will explain the reason fully to you. If we need to share your information with other services not directly involved in your care, such as childrens’ education services, we will only do so
with your consent.

We will not share information about you with your family or friends without your consent. Sometimes we have to pass on information by law. For example:

  • finding an infectious disease that may endanger the safety of others
  • where a formal court order has been issued or
  • in response to a formal written request by you or your legal guardian.

In rare occasions, information about you may be shared without asking your consent first, for example if you are involved in an emergency situation.

How you can help us to make sure we always hold the correct information about you

You can help us by:

  • giving our staff the right details about yourself and
  • letting us know if any of your details are not right or have changed since your last visit.


How your records may be used to help the hospice

Your records allow us to review the care we provide to make sure it is of the highest possible standard and meets all your healthcare needs. We may use information about you, and the care that you have received, to evaluate and improve the care that we provide to all patients. This may include checking the quality of care (clinical audit) or helping to investigate any concerns or complaints you or your family have about your care from the hospice.

Some information we hold may be shared with other professionals or organisations. For example:

  • to train and teach health and social care professionals or
  • to provide statistical information to national organisations with legitimate interests in healthcare and its management.

When we use your records in this way, we remove or disguise identifiable personal information about you wherever possible.

If removal of identifiable personal information is not possible, we will ask you directly for your consent to disclose it.

Consent

Whenever we ask you for your consent about these matters, your decision can be given to us verbally or in writing. We will record it in your hospice record. Your wishes regarding this information will be respected and can be changed by you at any time.

If you are not able to tell us your wishes, we are allowed to make what is called a ‘best interests decision’ about sharing necessary information to help your direct care.

How we keep your medical records safe and confidential

Everyone working for the hospice, or who receives information from us, has a legal duty to keep information about you confidential. This is monitored by the Caldicott Guardian, a senior clinician responsible for ensuring that patients’ rights to confidentiality are respected. Patient rights are recorded in the NHS Constitution which St Christopher’s also supports.

Our data protection officer ensures our information security and compliance with the Data Protection Act 1998 and General Data Protection Regulation 2018.

How long does the hospice keep health records?

We keep most records for eight years, unless the law requires them to be kept for longer. If we are told about a formal enquiry or legal action, we will keep the records until they are no longer required.

Your information rights

You have the right to know how we will use your personal information

That is what this leaflet aims to let you know.

You have the right to access your medical records – the ‘right of access to personal data’

If you want to do this, please talk to one of the hospice team responsible for your care. Most of our records are electronic and either one of our staff can help you see your records on a hospice computer or we can arrange for a paper record, which usually takes up to one month to arrange (three months in exceptional circumstances). You should always consider what may be contained in your record before agreeing to the release of your full record for yourself or for example for a solicitor. A healthcare professional is obliged to check the record before it is passed onto the request or and remove any information about third parties or information which, in their opinion, could cause harm or distress to you or to anyone with whom you may share the record.

You have the right to object to us making use of your information

You have the right to ask us to change or restrict the way in which we use your information

We are obliged to agree if it is possible to do so. We will however inform you of potential risks to your care if you restrict the sharing of information with others providing care to you.

You have the right to include any corrections you want to make in the record

Who do I contact if I would like to know more or have concerns?

If you would like to know more about how we use your information, or if you have concerns about it, or if you require this leaflet in a different format or language please speak to one of your hospice team.

Alternatively, you can contact the Caldicott Guardian or the data protection officer by writing to them at the address on the back of this leaflet.

You have the following rights:

  • To know how we will use your personal information. That is what this leaflet aims to let you know
  • To access your medical records – the ‘right of access to personal data’. If you want to do this, please talk to one of the hospice team responsible for your care. Most of our records are electronic and either one of our staff can help you see your records on a hospice computer or we can arrange for a paper record, which can take up to 40 days to arrange. (You should always consider what may be contained in your record before agreeing to the release of your full record for yourself or for example for a solicitor. A healthcare professional is obliged to check the record before it is passed onto the requestor and remove any information about third parties or information which, in their opinion, could cause harm or distress to you or to anyone with whom you may share the
    record)
  • To object to us making use of your information
  • To ask us to change or restrict the way in which we use your information. We are obliged to agree if it is possible to do so
  • To include any corrections you want to make in the record.

For families and carers

We may gather family and carer information either from patients, professionals who refer to us or directly from families and carers themselves. As a consequence, our bereavement, spiritual care
and fundraising departments may be in touch to invite you to counselling, memorial services and events. The hospice manages personal information for families and carers along exactly the same
principles as the patients, as outlined above.

If you do not wish to be contacted, please let us know and we will record and respect your wishes.

For supporters and other service users

The hospice manages personal information in other areas, such as fundraising supporters or those who use our education services, with exactly the same principles as for its patients, as outlined above.

It is really important for your care that the information you give us is as full and accurate as possible. If you would like this information in a different format, such as audio tape, braille or large print, or in another language, please speak to the Communications Team on 020 8768 4500 or email communications@stchristophers.org.uk.

St Christopher’s Hospice is a charity and our continued work is only made possible by your generous donations. Please consider making a one-off donation or becoming a regular donor. To find out more about how you can help, please visit stchristophers.org.uk/donate.