Guidance

Appendix 2: authority to act and sharing information guidance for ICBs

Published 14 December 2023

Applies to England

Introduction

This guidance note for integrated care boards (ICBs) sets out some of the issues to consider with regard to:

• establishing appropriate authority to act (establishing whether the individual has the legal power to make the request on behalf of the deceased person)
• sharing information

in relation to requests for a review of a previously unassessed period of care (PUPoC) for NHS Continuing Healthcare (CHC) when the individual concerned is deceased. This guidance note cannot cover all scenarios; therefore, it is important that each case should be considered on its own merits and circumstances.

Key principles if no documentation is provided

The ICB should inform the applicant that it is unable to provide any health information concerning the deceased or discuss the matter with the applicant unless satisfied that the applicant is a personal representative (executor or administrator) or that they can demonstrate that they are someone who has a claim arising from the deceased’s death.

Where the request is from a solicitor, the ICB should ask them for proof of authority to act on behalf of either the personal representatives, or someone with a claim arising from the death, before they can enter into any dialogue regarding the review.

Sharing of records of the deceased

The ICB will need to consider the extent to which it can share medical information with the person requesting the review. The records of the deceased are still confidential, even after death. Access to those records is covered by the Access to Health Records Act 1990.

This allows access to:

• the deceased’s personal representative (either executors or administrators) to enable them to carry out their duties
• anyone who has a claim arising from the death

Evidence required for sharing of the deceased’s records

Personal representatives

Executor:

Where an executor seeks access to records, evidence of their right to ask for the records should be requested. Where there is a will, this can be a copy of that document showing the individual named as an executor. Alternatively, the Probate Court, known as the Probate Registry, issues a legal document called a ‘Grant of Probate’ which gives someone legal authority to deal with the estate of a person who has died, and this should be requested.

Administrator:

Alternatively, where the deceased has died intestate, and the value of the deceased’s estate exceeds £5,000, the Probate Registry will issue a letter from the court known as ‘Letters of Administration’ which will enable a named individual to carry out duties to settle the estate.

Persons indicating that there is a claim arising from the death

When an individual is seeking to request a PUPoC assessment on the basis that they have a claim arising from the deceased’s death, they need to demonstrate to the ICB what that claim is. Once such an explanation has been provided, it should be carefully considered by the ICB. However, any additional information regarding the outcome of any assessment that is made will form part of the records of the deceased individual and will be subject to the provisions of section 3 of the Access to Health Records 1990.

This will allow the ICB to take a decision as to the disclosure of relevant records to the individual in line with the scope of the potential claim indicated, and to allow the claim to be dealt with.

It is important that the decision-making process around disclosure of records is captured and recorded.

It is important to note that sometimes an individual will indicate that they are acting in relation to a deceased’s estate under a lasting power of attorney (LPA) document or similar. An LPA, attorney document or deputyship ceases on death and will not provide the nominated individual with authority to deal with the estate. Individuals appointed under an LPA and as personal representatives under a will, for example, could be different people.

Redaction of information

Even where somebody is entitled to the deceased’s records, it is not a general right of access. The same protections apply to information contained within records of the deceased as to living individuals.

Therefore, before any information is shared, the ICB will need to review the information to determine whether there are any reasons for certain information to be redacted.

Third party information

Before information is disclosed, the ICB should consider whether the information to be released contains third party information - in other words, information that relates to any person other than the deceased. It should be noted that health and social care professionals who have made the entries in the records do not count as third parties for this purpose. 

If the information contains any data identifying a third party, it should be redacted (but details of health and social care professionals should not generally be removed).

Access should not be given to any part of a record which discloses information relating to a third party who can be identified from that information unless:

• the third party has consented to the disclosure
• it is reasonable to disclose the records, in all circumstances, without the other individual’s consent. In deciding whether it is reasonable, consideration should be given to:
  • any duty of confidentiality owed to the other individual
  • any steps taken to seek the other individual’s consent
  • whether the other individual is able to give consent
  • any express refusal of consent by the other individual
  • any expression of wishes from the deceased about disclosure, made before they died

If in doubt, it’s better to err on the side of caution and redact identifying third party information.

Information held on the express understanding of confidence

There may be circumstances where an individual has expressly stated that certain information contained within medical records is not to be shared with any other person. This request remains valid after death. Consequently, if there is evidence that the deceased did not wish for any part of their medical information to be disclosed, it should remain confidential indefinitely, even after death. The ICB should respect these wishes regardless of who is requesting access unless there is a court order to the contrary.

Information which would cause harm to physical or mental health

It must also be considered whether disclosure of any information could lead to any person (which can include a professional) being put at risk of serious harm. Before any disclosure takes place, the information should be reviewed closely to determine this risk. Harm could include physical or mental harm.

The test for serious harm has a high threshold and should be considered by the key clinician responsible for the clinical care of the individual when they were alive, if there are concerns about this point. Where this exemption is used, you must be prepared to defend the decision-making rationale, if challenged, to the Information Commissioner or in court.