Disclosure of records after death

  • Information governance

This guidance relates to requests made by a family member, friend, partner etc for a copy of a deceased patient's medical record or part of it.

After a patient has passed away a practice may receive a request for disclosure of the deceased patient’s records or for the provision of information therein.

The main focus of this guidance relates to requests made by a family member, friend, partner (or similar) and the purpose of the request in such circumstances may relate (but would not be limited) to one or more of the following factors (which may or may not be stated):

  • To achieve a better understanding of the circumstances surrounding the patient’s death.
  • To facilitate a life insurance claim.
  • To facilitate a challenge to the Will.
  • To facilitate a complaint or claim in relation to the care that was provided to the patient.

Requests of this nature must be handled in a sensitive way and in accordance with the relevant legislation and professional guidance.

If the purpose of the request is to achieve a better understanding of the circumstances surrounding the patient’s death, then you may wish to consider whether information could be better imparted by way of a meeting than by providing a copy of part of the medical records.

Primary Care Support England (PCSE)

Since Monday 1 August 2022 GP practices have been required to respond to requests for disclosure of deceased patient’s records however, PCSE will process such requests if:

  • the deceased patient was unregistered at time of death or
  • the last registered GP Practice has now closed

Please note that GPs are no longer required to print off digitised records and send them to PCSE after the death of an individual, you must simply store the record for the required 10-year retention period.

Further information can be found on the PCSE and NHS Transformation websites.

On the basis that The Good Practice Guidelines for GP electronic patient records (v4) states that it is essential that both the audit trail and the record with which it is associated must be retained by a practice even when a patient is no longer registered at the practice (which would include deceased patients), you should retain archived copies of deceased patients’ records on the practice system.

Deciding whether a request should be dealt with by the practice or PCSE

In relation to responding to requests for disclosure of deceased patients’ records (and assuming that the requestor has a right of access to the requested information), the following scenarios could apply (albeit scenarios 2 and 3 are likely to be less common):

  1. If you have all the requested information within the archived computer record, then it would be reasonable to respond to the request.
  2. If some of the requested information is held within the archived computer record and some is held by PCSE in the archived handwritten records, it would be reasonable to provide the information that you hold and direct the requestor to PCSE for the balance of the information.
  3. If the requested information is solely held by PCSE in the archived handwritten records, then you should direct the requestor to PCSE.

Relevant legislation

The Data Protection Act (2018) incorporated the General Data Protection Regulation into UK Law and on the basis that it relates to living persons (the term used in the Data Protection Act (2018) is identifiable natural person) it is not applicable to requests for disclosure of records after death.

Under section 41 of the Freedom of Information Act 2000 (FOIA), a duty of confidence attaches to the medical records of the deceased and therefore they would generally be exempt from a FOI request.

The relevant legislation is therefore the relevant sections of the Access to Health Records Act (1990) (the Act), the details of which are summarised below.

What is meant by ‘access’

The Act uses (but does not define) the term access to a health record – this could reasonably be construed as provision of information held within the health record of the deceased patient.

The question then follows as to how the information should be disclosed to the requestor (and this assumes that the requestor has a right to the access to the information that they are requesting).

The information could be provided in a number of different ways depending on the circumstances, which could include (but may not be limited to):

  • By way of email/hard copy correspondence (for example – if the request is to confirm a narrow set of information such as the diagnosis and date of diagnosis [etc] to assist with an insurance claim arising out of the death).
  • Supervised access to the on-screen record.
  • Providing copies of a section or sections the records.
  • Providing copies of the whole record (which would also involve the requestor approach PCSE [see above).
  • The key principles are that the information should be provided in the most appropriate, timely and agreeable way, depending on the circumstances of the request.

Eligibility to apply for access to a deceased patient’s records

The Act states (at S 3 [1] [f]) (the emphasis is added):

An application for access to a health record, or to any part of a health record, may be made to the holder of the record by any of the following, namely:

 (f) where the patient has died, the patient’s personal representative and any person who may have a claim arising out of the patient’s death.

Note: the “patient’s personal representative” would be an executor of the estate or the administrator of the estate if the patient died intestate.

It is noteworthy that the Act does not give a right of access to the Next of Kin (the Next of Kin may have a right of access if they are the personal representative or if they have a claim arising out of the death).

What information can be disclosed

The Act applies to records made on or after 1 November 1990 (albeit a pragmatic approach could reasonably be taken to requests for information prior to this date).

The Act states (at S5 [4]) (the emphasis is added):

Where an application is made under subsection (1)(f) of section 3 above, access shall not be given under subsection (2) of that section to any part of the record which, in the opinion of the holder of the record, would disclose information which is not relevant to any claim which may arise out of the patient’s death.

The Act goes on to state (at S5 [1]) (the emphasis is added):

Access shall not be given under section 3(2) above to any part of a health record which, in the opinion of the holder of the record, would disclose:

  •  Information likely to cause serious harm to the physical or mental health of any individual; or
  • Information relating to or provided by an individual, other than the patient, who could be identified from that information.

Note: this would not extend to healthcare professionals involved in the care of the patient.

Required disclosure timeframe and fees

The Act states (at S3 [5]) (the emphasis is added):

 … the requisite period is

  •  Where the application relates to a record, or part of a record, none of which was made before the beginning of the period of 40 days immediately preceding the date of the application, the period of 21 days beginning with that date;
  • In any other case, the period of 40 days beginning with that date.

The Act states (at S3 [4]) that no fee shall be charged.

Summary of the legislation

In summary, the Act provides a right of access to the relevant sections of the records (excluding information that is likely to cause serious harm to the physical or mental health of any individual and information relating to identifiable third parties) to the following applicants (within the specified timeframes):

  •  The personal representative (who would be an executor of the estate or the administrator of the estate if the patient died intestate).
  • Any person who may have a claim arising out of the patient’s death – the nature of the claim is not specified in the Act, however it could reasonably be deemed to include (but would not be limited to):
    • A potential clinical negligence claim arising from the death.
    • An insurance claim (which would include life insurance claim) arising from the death.
    • A claim in relation to a disputed Will.

Regarding “relevant sections”: the fact that the Act states that the holder of the record should exclude any information that is not relevant to any claim which may arise out of the patient’s death could be construed as inferring that the personal representative has unfettered access to the records, however a reasonable starting point is provision of the section of the records relevant to the purpose of the request.

Under the provisions of the Data Protection Act (2018), a person is able to make a Data Subject Access Request (DSAR) without providing a reason for their request. However, in relation to a request for access to a deceased patient’s records, in order to establish that the person making the request has a right of access to the records and to decide which part of the records is relevant to the request it will be necessary to seek the requisite clarification in relation to the request.

Relevant professional guidance

The relevant professional guidance can be found at paragraphs 134-138 of the GMC’s guidance entitled  Confidentiality (under the heading Disclosing information after a patient has died).

The guidance highlights that the duty of confidentiality extends beyond death and that if a patient (in life) asked for information to remain confidential, that wish should (usually) be respected.

In addition to providing relevant access to those who have a right of access under the Access to Health Records Act (1990) (see above), the guidance states that you may also have an obligation to provide disclosure in the following circumstances:

  • When disclosure is required by law (for example by way of a Court Order) or under a statutory process that sets aside the common law duty of confidentiality.
  • To assist the coroner.
  • On death certificates, which must be completed honestly and fully.
  • When disclosure is necessary to meet a statutory duty of candour.
  • When disclosure is justified in the public interest to protect others from a risk of death or serious harm.
  • For public health surveillance, in which case the information should be anonymised (unless that would defeat the purpose of the disclosure).
  • When a parent asks for information about the circumstances and causes of a child’s death.
  • When someone close to an adult patient asks for information about the circumstances of that patient’s death, and you have no reason to believe the patient would have objected to such a disclosure.
  • When it is necessary to support the reporting or investigation of adverse incidents, or complaints, for local clinical audit, or for clinical outcome review programmes.

The guidance also states that (in the absence of any instructions from the patient in life), you should consider:

  • Whether disclosing information is likely to cause distress to, or be of benefit to, the patient’s partner or family.
  • Whether the disclosure will also disclose information about the patient’s family or anyone else.
  • Whether the information is already public knowledge or can be anonymised or de-identified.
  • The purpose of the disclosure.

Whilst it could be construed that the above guidance conflicts with the provisions of the Access to Health Records Act (1990)), it does offer a pragmatic approach to providing information to sharing information in a sensitive way to those that are close to the deceased to assist with their grieving process.

Other considerations

If you receive a request for disclosure of a deceased patient’s records in which it is stated or inferred that a clinical negligence claim is being contemplated, then you must inform your MDO (if there is any potential criticisms of consultations prior to 1 April 2019) and/or the Clinical Negligence Scheme for General Practice (CNSGP) (if any potential criticisms post-date 1 April 2019).

The MDOs can be contacted via the following links:

If you require advice about a claim that falls (or may fall) in part or in full to the CNSGP, NHS Resolution can be contacted as follows:

  • Email – cnsgpnotification@resolution.nhs.uk – you should set out the basis of your query without providing any documents or patient identifiable information in the first instance and NHS Resolution will respond.
  • Telephone – 0800 0306798 – this is a 24-hour helpline that will allow you to discuss your query with a legal advisor.

Appendix 1: Template form of words in response to a request for the disclosure of the records of a deceased patient from a family member, friend, partner (or similar)

The below form of words could be adapted for responding to a request from a family member, friend, partner (or similar) and makes the following assumptions:

  • That you feel that a written response rather than a telephone call and/or meeting would be preferable.
  • That the nature and purpose of the request for disclosure of the records has not been specified.
  • Depending on the response, further clarification may be required.
  • If the person is seeking disclosure in the capacity of the personal representative, then consideration will need to be given as to the extent to which this needs to be corroborated (this will be dependant on the nature and circumstances of the case and how well the person making the request is known to the practice).

Draft starts

Dear X

 Thank you for your email/letter* dated insert date seeking disclosure of the records of insert name of the deceased.

 I was very sorry to hear of insert name of the deceased’s death and would like to take this opportunity to pass on my sincere condolences.

 I am naturally keen to assist you with your request; however, I am sure that you will understand that I do have an ongoing duty of confidentiality to insert name of the deceased.

 In order to fulfil the requisite obligations and help me to respond to your request I would be grateful if you would kindly provide the following information and clarification:

  •  In what capacity are you making the request?
  • If are you are making the request in the capacity of an executor or administrator of the estate, please provide written confirmation of your appointment to this role (for example, A certified copy of the Last Will and Testament, the Grant of Probate or a letter od Administration).
  • What is the nature and purpose of your request for disclosure of the records?
  • What information do you require (please specify the information that you require, with dates or a date range if relevant)?
  • I am sorry to have to seek this clarification at what I know is a difficult time for you and look forward to hearing from you.

 Yours sincerely

 Draft concludes

 *delete as applicable.

Appendix 2: Flowchart for requests for disclosure of a deceased patient from a family member, friend, partner, solicitor (or similar)

Please note that the flowchart is not intended to apply to requests for records made by the police, the coroner, other statutory bodies or to conversations that a GP may have with relatives (about matters that are already in their field of knowledge) in the context of routine bereavement visits.

A request is made for copies of some or all of the records of a deceased patients by one of the above-named parties (the requestor).
Does the requestor have a right of access to the records under the provisions of the Access to Health Records Act (1990)?, for example:

  1.  Is the requestor an executor or the administrator of the estate?
  2.  Does the request relate to a claim arising from the death?
No or not sure – seek further clarification (please refer to the template letter and associated guidance at Appendix 1)

 

Yes – clarify the nature and purpose of the request (please refer to the template letter and associated guidance at Appendix 1).

 

No – the requestor will need to be provided with a sensitive explanation that they do not have a right of access to the records* and provided with any relevant further advice/signposting.

 *You should consider if you can justify providing a minimal, relevant disclosure under the provisions of the GMC guidance entitled Confidentiality (under the heading Disclosing information after a patient has died).

 

 

 

 

Disclose the section(s) of the records that are relevant to the nature and purpose of the request, with reference to the following:

  1. The records should be screened in order to remove information which (if disclosed) would be harmful to any party.
  2. The records should be screened to remove third party information (this would not include the identity of healthcare professionals involved in the care of the patient).
  3. If the patient (in life) requested that information should remain confidential, then that wish should be respected (unless the circumstances would justify disclosing such information).